Report to the Regional Director: WHO South-East Asia Advisory Committee on Health Rsearch, twenty-sixth session, Thimphu, Bhutan, 17-20 April 2001

© World Health Organization 2001 This document is not a formal publication of the World Health Organization (WHO), and all rights are reserved by the Organization. The document may, however, be freely reviewed, abstracted, reproduced or translated, in part or in whole, but not for sale or for use in conjunction with commercial purposes. The views expressed in documents by named authors are solely the responsibility of those authors . Page iii CONTENTS Page 1. INAUGURAL SESSION.....................................................................................1 2. INTRODUCTORY AND BUSINESS SESSIONS (Agenda items 2 and 3).............3 2.1 The Work of the Regional Research Policy and Cooperation Programme of the WHO South-East Asia Region, 2000-2001 (Agenda item 3.1) ................................................................5 2.2 Strategies for Health Research Development in the WHO South-East Asia Region (Agenda item 3.2) ....................................8 2.3 Regional Perspectives in Human Genetics: Scientific Debate.................... (Agenda item 3.3).................................................................................11 2.4 Proposed Criteria for Health Research Activities Supported by WHO in the South-East Asia Region (Agenda item 3.4).........................18 2.5 Selected Global Health Research Activities (Agenda item 3.5)...............21 2.6 Global and Regional Coordination in Health Research (Agenda item 3.6).................................................................................22 2.7 Promoting the Use of WHO Collaborating Centres and other Networks in SFAR (Agenda item 3.7)...........................................25 3. CLOSING SESSION........................................................................................28 Annexes 1. Inaugural Address by Dr Uton Muchtar Rafei, Regional Director, WHO South-East Asia Region ........................................................................30 2. List of Participants..........................................................................................34 3. Terms of Reference........................................................................................38 4. Agenda and Working Schedule......................................................................39 5. List of Working Documents............................................................................41 6. List of Information Documents.......................................................................42 Page 1 1. INAUGURAL SESSION The twenty-sixth session of the WHO South-East Asia Advisory Committee on Health Research (SEA-ACHR), was held at the Banquet Hall in Thimphu, Bhutan, from 17th to 20th April 2001. In his inaugural address, Dr Uton Muchtar Rafei, Regional Director, WHO South-East Asia Region, thanked the Royal Government of Bhutan for hosting for the first time a meeting of SEA-ACHR. He welcomed ACHR members and special invitees and highlighted WHO’s Corporate Strategy, the main message of which was to place health in a broader context. He said that knowledge and research were central to this strategy. Setting the agenda for, and stimulating research and development was one of the core functions of the Organization. There was a need to assess health situations and trends to obtain evidence for improving the performance of health systems. Research and development were essential for formulating healthy public policies and to underpin health sector reforms in the countries. There was also a need to focus on how tried and tested technologies could reach the poor and vulnerable, on development and improvement of appropriate guidelines and technologies for disease prevention and control and on efficient health care management and service delivery. The Regional Director stated that the newly constituted SEA-ACHR had brought together research policy-makers and research implementers and now had a wider range of expertise to deal with the complex nature of health research and to meet the enormous challenges of public health in the Region. The first of these challenges was how to ensure basic health services for all, especially for the poor, women and vulnerable groups. The second one was how to create conditions, which would promote health and self-reliance where research could help understand health-seeking behaviour. These were important pre-conditions for empowering people, especially women, and for looking after their own health. The third challenge was how to close the gaps and inequities in health in today’s societies. There was a need to develop and sustain health systems that would improve health outcomes equitably and WHO South-East Asia Advisory Committee on Health Research Page 2 efficiently. Fourthly, there was a need for concerted effort to uphold and enforce health ethics and to protect and preserve the dignity and worth of the human being, within and between countries. There was also a need to strengthen ethics in health practices, in research as well as in the approach to public health in the present scenario of globalization. Development and sustenance of healthy public policies was vital for providing an effective health dimension to social, economic, environmental and developmental policies. The Regional Director urged SEA-ACHR to take a fresh look on how research and knowledge could best contribute to address the challenges of the Region. In the current session, ACHR would be reviewing and updating the ‘regional health research strategies’ developed in 1993. He also called upon the Committee to define regional perspectives in human genetics, as a response to the recent request of the WHO Director-General, made to the Global ACHR, to study and report on the ethical, legal and social implications of human genome research. He underscored the need to strengthen networks of WHO Collaborating Centres and of national centres of expertise, and to maximize and tap the potential of partners. While learning from the success of research efforts and institutions, WHO should continue to facilitate and promote various networks for health and health research development, to help address the challenges that lay ahead (for full text see Annex 1). Inaugurating the meeting, HE Lyonpo Sangay Ngedup, Minister for Health and Education, Royal Government of Bhutan, expressed his deep appreciation to the WHO Regional Director for choosing Bhutan to host the 26th session of SEA-ACHR. He said that the selection was especially appropriate, since Bhutan was trying its best to strengthen its capability both in health research management and promotion. Recognizing the importance of health research for effective decision-making, the Royal Government of Bhutan had established a Research and Epidemiology unit within the Department of Health. He commended WHO for providing technical and financial support to its research capacity strengthening activities as well as for bringing the countries of the Region together and facilitating collaboration among them. The Honourable Minister stressed the need for utilizing the technical and financial resources available within the Region and exploiting the talent available to advance health care delivery. He stressed that since the Region carried the major burden of communicable and noncommunicable diseases, there would be every reason to enhance health research. In this Report of the Twenty-sixth Session Page 3 regard, he requested the Regional Director to strengthen and accelerate collaborative activities, utilizing WHO Collaborating Centres and the national centres of expertise. There was also a need to develop new centres of expertise so that countries could utilize their service, research and training. Since Bhutan still needed to strengthen its health research management and capacity, he requested WHO to work closely with the Ministry of Health in promoting and developing health research in the country. The Honorable Minister stated that it was time for health research to reach the grassroots level. Research should be demystified and health research results be made accessible to all. In this context, he requested ACHR to work towards building confidence and promoting exchange of information. He agreed with the Regional Director of the need to put emphasis on ethics in health research. He urged ACHR to seriously consider this matter and share the concerns with the world and also guide researchers in the Region. He said that Bhutan was at the preliminary stage of health research development and could only generate baseline data. It would be a long time before the country was able to develop its health research system. As this year is being devoted to mental health, ACHR members should embark on health research, in the area of utilizing traditional ways such as Yoga and meditation to deal with mental illnesses. The countries of this Region should also tap the wisdom of their ancient civilizations for national health development. Given the challenges that existed in Member Countries, he urged WHO to take a lead. 2. INTRODUCTORY AND BUSINESS SESSIONS (Agenda items 2 and 3) Seventeen members of SEA-ACHR, 7 special invitees as well as 9 members of the WHO Secretariat headed by the Regional Director attended the twenty- sixth session. In addition, 7 senior public health and research staff from the Ministry of Health and Education, Royal Government of Bhutan, attended as observers (see Annex 2 for List of Participants). The Regional Director, Dr Uton Muchtar Rafei, in his introduction to the business session, highlighted the future policy and strategic challenges of health research in the Region. He said that updating the regional health research strategies in the light of new health challenges and opportunities was WHO South-East Asia Advisory Committee on Health Research Page 4 a high priority. The International Conference on Health Research Development (ICHR), organized by WHO and other health research development partners, held at Bangkok last year, agreed upon future actions for the development of health research in the global context. In order to fit in with the global conceptual framework and action plans, he had established an expert group that had developed a draft document on regional strategies for health research development. He requested ACHR to critically review and suggest improvements to this document, so that it could be submitted to the 54th session of the SEA Regional Committee in September 2001. The topic on the regional perspectives in human genetics was of regional and global concern. While taking note of the knowledge on human genetics and its applications for health, there was a need to focus on the ethical, legal, social, cultural and economic implications, particularly for developing countries. The debate during this session would provide the regional dimension to the global effort. Enhanced use of WHO Collaborating Centres and national centres of expertise would ensure the utilization of the available expertise within the Region for scientific development. As already recommended by earlier sessions of SEA-ACHR, there was a need to focus on national health research systems, in order to improve the health status of the people, especially in reducing inequality and improving the efficiency and effectiveness of health systems. There was a need to strengthen planning, coordination and management of national health research, and also in improving ethical review mechanisms and processes and building research capacity through networks and training. An expert group had developed, in early April 2001, a draft “Regional Vaccine Policy”, that would be widely shared with development partners and Member Countries. Professor NK Ganguly (India), Chairperson of SEA-ACHR, warmly welcomed participants and expressed his appreciation to the Regional Director for giving him the renewed opportunity to chair this regional scientific body. He said that he would carry out his duties in accordance with the terms of reference of SEA-ACHR (Annex 3). Dasho (Dr) Sangay Thinley (Bhutan) was unanimously nominated Co-Chairperson of the twenty-sixth session. A report-drafting group, consisting of Professor Dulitha Fernando (Sri Lanka), Professor Porapan Punyarathbandhu (Thailand) and Dr Agus Suwandono (Indonesia), was constituted. The Committee unanimously adopted the Agenda and the Working Schedule (Annex 4). Report of the Twenty-sixth Session Page 5 2.1 The Work of the Regional Research Policy and Cooperation Programme of the WHO South-East Asia Region, 2000-2001 (Agenda item 3.1) Dr. Adik Wibowo, Regional Adviser for Research Policy and Cooperation (RPC), WHO-SEARO, reported on progress of the RPC programme during 2000-2001. She said that the regional RPC programme of WHO focused on promotion of ethics in health research, strengthening national health research capacity and collaboration, networking and partnerships with global, international and national health research institutions, organizations and forums. The Regional Office was working on the development of a database on health research as a mechanism for generating knowledge for wider use and for monitoring the progress of WHO-supported research projects. The Committee reiterated that knowledge generated from research itself was not sufficient to improve health. A triangular approach to deal with difficult problems, as explained, might be useful. The triangle has three components: (1) the creation of relevant knowledge, through health research, at one angle; (2) social movement (social learning) at another; and (3) political involvement as third angle. The creation of relevant knowledge is crucial but not in itself sufficient. It must interact with two others, i.e. social movement and political involvement. Without relevant knowledge, social movement and political involvement could not become stronger and might even deviate from their rightful paths. Relevant knowledge also has to be translated into forms and languages, which could empower the public. Actions on social mobilization would demystify the knowledge and put it into public concerns. When public concerns are created and awareness of knowledge is built within the community, the third component of the triangular approach, i.e. political involvement will come into the picture. Politicians and decision-makers have the authority and responsibility to create and use relevant knowledge and also to derive and push social learning processes. All three sides of triangular approach are to be in equilibrium and the lack or imbalance of this “triad” could lead to failure in solving difficult problems. The Committee underlined that the objective of the national health research systems could only be achieved by putting knowledge creation as a whole, incorporating social and movements and political involvement. WHO South-East Asia Advisory Committee on Health Research Page 6 In order to be able to face the challenges in health in the 21st century, as a result of developments in international and national health research systems, an in-depth review of the existing regional health research strategies was carried out by a group of experts. The new framework has been submitted to the current session for discussion and recommendations. The final draft incorporating the suggestions of SEA-ACHR would be submitted to the 54th session of the SEA Regional Committee in September 2001 for review and endorsement. Ethical issues in health research are a key component of health research management and the work on ethics in health research is one of the main regional activities. The results of a study on ethics and education (Multi- centred baseline study on ethical values in teaching Institutions/hospitals in six SEAR countries), carried out by the Regional Office in collaboration with the South-East Asia Health Ethics Network (SEAHEN), were published in three volumes in 2000. These documents were widely available for use as reference documents as well as for developing further studies. The South-East Asia and the Western Pacific Regional Offices, in collaboration with national ethical review committees of some member countries from these Regions, established a Forum for Ethical Review for South East Asia and Pacific (FERCAP) in early 2000. A training course was organized by WHO and FERCAP, in Thailand in July 2000, in collaboration with TDR/HQ. Ethics in health research recently received greater attention at the country level. National review workshops and training courses were conducted as a follow- up of the regional training. The document on operational guidelines for national and institutional ethics committees that review biomedical research was developed by TDR/HQ and had been used as a reference document by the countries of the SEA Region. Some countries have translated these guidelines into their local languages for wider use. A few countries, such as India, Nepal, Indonesia and Thailand, have reviewed and updated their national ethical guidelines for health research. The Committee felt that strengthening research capacity is an important component for improving the functioning of national health research systems and concerted effort is needed in this area. It noted with satisfaction that four health research networks, out of a total of 10 recipients of “International Award for Health Research Capacity Strengthening”, sponsored by WHO and the Rockefeller Foundation, were from the South-East Asia Region. Significant Report of the Twenty-sixth Session Page 7 steps have been taken on various intercountry initiatives to strengthen research management and training. A few countries had put their efforts in infrastructure development. In the context of mainstreaming of health research within the framework of overall health development, the Committee emphasized the need to expand health research capacity strengthening to the technical areas such as health economics, social and political arena, biotechnology, agriculture, education and industries, etc. This would ensure sustainable generation and utilization of knowledge. The Committee stressed the continuing need to strengthen effective management of health research in the countries. The activities would include improving the knowledge and skills in research management and leadership, advocacy, communication and decision-making process, targeted to research managers. This skill development would have dual benefits – one, to create an enabling environment for effective functioning of the national health research systems, i.e. stewardship, planning, monitoring, feedback and evaluation; and two, to correct the chronic gaps between research and policy-making, especially in relation to the generation and use of knowledge. The Scientific Working Groups had addressed these issues and the recommendations should now be translated into actions at the country level. The management of health research could also help to accelerate the process of mobilizing society’s concerns and obtaining political commitment. An example is the success of Thailand adopting legislation to use 2% of tobacco and alcohol tax-revenue for health promotion. The Committee further debated on how research results could be effectively utilized and how it was given serious attention. The application of scientific rigor and the requirement of peer reviews for publication in scientific journals are stringent. To use the health research results for policy-making required different skill and modalities. Development of an Internet web site is one of the mechanisms for increased access to new knowledge. One constraint is that many researchers lack the ability to translate scientific research results into policy recommendations. The Committee stressed the importance of the role of WHO in elucidating and fostering public debates. The Committee reiterated that the development of effective and efficient national health research systems could be linked with the overall framework of national policy on science and technology as well as of national health development. This linkage would secure the contributions of health WHO South-East Asia Advisory Committee on Health Research Page 8 research results towards overall development. The Committee agreed that the regional RPC programme should continue to work on the principle of providing evidence-based information for policy. It should focus on strengthening the health research needs of the countries. It should continue to improve national capacity for formulation of research policies and priorities, and utilization of research results. The activities should also bridge the gap between researchers and policy-makers in order to support and increase the dissemination of information, networking and twinning and promoting partnerships for achieving cost-effective work in research. Recommendation WHO, in collaboration with national health research councils or analogous bodies, should update the profiles of the national health research systems, using a common framework, and also undertake a regional analysis to identify the strengths and weaknesses of each system. 2.2 Strategies for Health Research Development in the WHO South-East Asia Region (Agenda item 3.2) The regional health research strategies for South-East Asia were developed in 1993. At the start of the 21st century, new challenges and opportunities emerged and there was an urgent need to review and revise these strategies to address these challenges. The future research agenda and action plans for the next two decades were thoroughly debated and agreed upon at the International Conference on Health Research for Development (ICHR) held in Bangkok 2000. In the light of the above the Regional Director, constituted an expert group1 to review the existing regional health research strategies and prepare a revised strategy. The expert group met at the Regional Office, in New Delhi, in end- March 2001 and developed a draft document on strategies for health research 1 The expert group consisted of: a) ACHR members - Professor NK Ganguly, Professor Chitr-Sitthi Amorn and Professor Dulitha Fernando; b) Senior Health Research Scientists - Professor Aung Than Batu, Professor CAK Yasudien and Dr Wiput Poolchareon and c) WHO Secretariat – Dr Than Sein, Dr Adik Wibowo, Mr AM Meliala and Dr SP Jost. Report of the Twenty-sixth Session Page 9 development in South-East Asia Region (Document SEA/ACHR/26/6). The group felt that there was a need to shift the focus of attention of the draft paper. The 1993 WHO Document on regional health research strategies dealt with the identification of research priorities, with particular reference to emerging health problems, primary health care and health-for-all, and it provided a wide range of actions on conducting research. The document developed by the expert group would emphasize the development and strengthening of health research systems in the countries. The Committee then reviewed the draft document (in group works and at plenary sessions), and provided in-depth analysis. The following changes were suggested: Objectives: The main purpose of the revised regional health research strategy paper should be to provide a framework for the countries and their development partners, enabling them to review and plan their health research development efforts using system approaches. The framework would help the countries to identify a series of actions for improving their national health research systems. National health research systems: The definitions of (a) health systems, (b) health research and (c) health research systems should be clarified in simple and practical terms. Values and principles as well as key objectives should be defined for each of these, with a clear indication of the relationships among them. It is reaffirmed that the purpose of health research systems is to provide appropriate knowledge and tools to the health systems in order to improve equity, quality and efficiency of health. Health research has its own values, i.e. generating and validating knowledge and information; monitoring and evaluating policy and ensuring that policies are translated into practice to improve health; developing new and appropriate technologies; and contributing to development. The Committee endorsed the nine key objectives of the national health research system, emphasizing more on planning, management, coordination, mobilizing resources and monitoring and evaluation. It also looked into the functions and architecture of the national health research systems using a few country examples. The relationship of systems context, governance, generation and use of knowledge, leading to key challenges in health research development was debated. One of WHO South-East Asia Advisory Committee on Health Research Page 10 the processes at the national level could be the formation of “a national health research forum” which might allow wider participation in bringing people together to discuss issues towards a unified concept at national and sub-national levels. The document elucidates a wide variety of health research systems already in existence as well as their changing roles. It also suggested an independent working environment for effective maintenance and sustenance of scientific rigor. Key challenges in health research system development: The Committee endorsed the four key challenges to health research development; viz. (a) health research values, i.e. equity and ethics; (b) research environment, i.e. inadequate resources, multiple actors, deficient research culture; (c) sustainable health research systems, i.e. the changing relationships between stakeholders, shortage of research capacity and financing; and (d) knowledge production and application, i.e. deficiency of forums (mechanisms or platforms) at national or institutional level to promote and clarify health research inputs to the functions of the health systems and policies. Strategies: The five main strategies for strengthening national health research systems development are:(a) management of knowledge as public goods and exploring the frontiers, (b) situation analysis of national health research systems; (c) strengthening capacity in technical and managerial areas of health research; (d) creation of an enabling research environment and enhancing partnerships, and (e) governance at the country as well as international levels. Strategies to action: The Committee agreed on the need for a situation analysis of the existing health research systems in the countries. Such an analysis would generate information for better understanding of the strengths and weaknesses of national health research systems, which would help develop and strengthen their own systems. The situation analysis should go beyond mere description, but facilitate appropriate cross-country comparison and promote linkages between countries. SEARO may need to work with the ACHR members and national health research institutions to develop an appropriate framework and tools. SEARO should also facilitate regional partnerships in order to strengthen national health research systems in the countries. The systems approach embodied in the new regional health research strategies is likely to be profoundly important for implementation and sustainability. Report of the Twenty-sixth Session Page 11 The next steps: The Committee noted that the draft document would be further revised based on the inputs from members. The expert group is scheduled to reconvene in July 2001 to produce a final draft, which will then be submitted to the 54th session of the SEA Regional Committee, in September 2001, for review and endorsement. The countries would use the new regional strategy document to strengthen national research systems. Periodic monitoring and final evaluation are to be undertaken. The Committee proposed that the Chairperson present a special report to the Global ACHR meeting in June 2001, on the work done by SEA-ACHR on the development of regional health research strategy. It also recommended promotion of the systems approach on strengthening national health research development, in other WHO Regions as well. The Committee also proposed that the title of the paper be changed to “Strategies for strengthening national health research systems in WHO South-East Asia Region”. Recommendations (1) The Committee endorsed the actions taken by WHO-SEARO to finalize the paper on Strategies for strengthening the national health research systems in the WHO South-East Asia Region. It also requested SEARO to further improve the document, taking into account the suggestions and modifications proposed at the meeting as well as contributions received at later consultations. (2) The Committee endorsed further promotion of the systems approach on the strengthening of national health research systems in the countries of the Region as well as in other WHO regions. The latter would need to be undertaken by submitting a special report to the Global ACHR. 2.3 Regional Perspectives in Human Genetics: Scientific Debate (Agenda item 3.3) Dr U Than Sein, Director, Department of Evidence and Information for Policy, WHO-SEARO, provided a short introduction on the scientific debate on regional perspectives in human genetics. He briefly covered historical overview from the era of classical genetics, reverse genetics, genomics, to the WHO South-East Asia Advisory Committee on Health Research Page 12 new era of genetics. He recalled that the landmark “Human Genome Project” had commenced in 1988 and the anticipated sequencing of the human genome was virtually completed - several years ahead of schedule. WHO at all levels had responded to the challenge posed by these developments. The Director-General had recently requested the Global Advisory Committee on Health Research to prepare a “Special Report on Genomics and Health” by the end of 2001. It was timely that the Regional Director requested the 26th SEA-ACHR to consider regional perspectives on the ethical, legal and social implications (ELSI) of human genetics. In addition, the Committee was requested to consider how and in what way the Region would be contributing to the Global ACHR’s special report on genomics and health. The results of the SEA-ACHR debate would also be useful in identifying actions for the countries. Special invitees of experts in this field, Professor R Williamson, Professor SS Aggarwal, Dr Lalji Singh and Professor Prawase Wasi, had shared their views, concerns and perspectives, on the development of human genetics, with particular reference to the Human Genome Project as well as the understanding of ELSI and the role of WHO. Professor R Williamson, Director, The Murdoch Institute, Australia, made a presentation on salient aspects of the Human Genome Project (HGP), with present and future implications. He stated that HGP was international and public in nature. The outcome of HGP would benefit not only health but also agricultural and biotechnological fields. However, it must be applied ethically. A variety of usage of human genome information in medical practice had already been established such as diagnosis (including prenatal), prediction, and therapy. However, the gene therapy was still in an experimental stage since the human body had natural defensive mechanisms towards foreign DNA. It was estimated that there might be more than 6000 single gene disorders, most of which extremely rare. In some cases, the relevant gene had been found and mutations identified. The use of knowledge at the personal level might be higher than its current commercial value. Most of the people would suffer and die from major non-communicable diseases, such as cancer, heart disease, diabetes, and mental disorders, which were multi-factorial or polygenetic diseases caused by several genes supplemented by the Report of the Twenty-sixth Session Page 13 environment and behaviour. This underlined the importance and understanding of human genetics. It was essential that appropriate ways were identified to make awareness and also to utilize the already available knowledge on human genetics effectively, quickly and ethically to achieve public health benefit, especially for the benefit of poor and disadvantaged groups such as women, tribal peoples and those with disabilities. It was time for both developing and developed countries to move forward together on accelerated development of human genetics, and enable all countries equal access to knowledge and technology on human genetics. At present, much of the knowledge and technology, being gained in human genetics, were simple and affordable and also easily transferable to the countries in need. It was also essential to carefully review the ethical, legal and social implications of human genetics within the socio-cultural and economic context of the countries. There was a need to carefully distinguish between the personal decisions of individuals (or groups of individuals) and those of government (national policies). An appropriate ethical and legal framework on human genetics is needed at both individual country and international levels. WHO being an international health agency had a unique role to build consensus on both positive and negative implications of human genetics. WHO should come forward and take the leading role in bringing scientific and public health communities, health planners and policy-makers to a common forum. Professor S.S. Agarwal, Head, Medical Genetics Department, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India, in his presentation laid special emphasis on the clinical perspective of human genetics. He stressed that the subject had been misunderstood and neglected and recommended a change in the attitude of health care providers, keeping in mind that genetic diseases were not rare and a lot could be done for further improving the deciphering of the human genome sequence. He said that human genetics was closely related to human welfare; genetic diseases affected not only the individual concerned, but also their family and the society at large. The emergence of genomics was bound to lead to a paradigm shift in the practice of medicine. It would bring in a new era of predictive and molecular medicine, including the application of pharmacogenomics and toxicogenomics. He stated that genetic diseases were already of public health importance even in several developing countries, WHO South-East Asia Advisory Committee on Health Research Page 14 which would further increase with better control of environmental and nutritional disorders. An investment in human genetics would provide large returns in the form of primary prevention f diseases and promotion of human health. Dr Lalji Singh, Director, Centre for Cell and Molecular Biology, Hyderabad, India, emphasized the technological development in relation to human genetics from the perspective of a developing country. He said that after completion of the sequencing of human genome the future challenge would be to determine the function of most of the genes that was presently unknown. Considering the fact that future medicine was going to be individualized based on the genotype of the individual, it was important that each country developed new technologies such as DNA microarray, proteomics, bioinformatics, functional genomics, pharmacogenomics and toxicogenomics. Since these technologies were very expensive, it would be difficult to provide than to every research institution and university. Therefore, there was a need to create resource centres within and between the countries of the Region and to network them. The South-East Asia Region was very rich in biodiversity. There were large families and consanguinity in this Region which would be very valuable for identifying and mapping of new disease- causing genes. This region could effectively contribute to generating new knowledge in the post-genomic era because of its inherent strength in information technology and its great potential in the emerging area of biotechnology and bioinformatics. The particularly emphasized creation of such resource centres and networking of the collaborating institutions in the South-East Asian region. In his presentation, Professor Prawase Wasi, Professor Emeritus and the Former Chairman of SEA-ACHR, emphasized the perspective on genomics and health especially with respect to future implications on the use of knowledge and technology in the developing countries. Newer medical practices such as predictive and preventive health care are now available in developed countries, with direct application of knowledge gained in human genetics, and these practices are likely to be expanding rapidly in developing countries. They would give rise to complex issues related to the ethical, legal and social implications. Such issues would range from DNA as private property, enquiry of insurance companies on genetic susceptibility for premium purposes, cloning of humans and the shift from population diversity to population homogeneity. Report of the Twenty-sixth Session Page 15 Professor Chantapong Wasi (Thailand) moderated the subsequent panel discussion, to elicit the views of SEA-ACHR on regional perspectives on ELSI of human genetics and how these views could contribute to the special report of the Global ACHR. The members highlighted the unique role of WHO in addressing the issues related to both positive and negative impacts of knowledge, technology and application in the post-genomic era. WHO, being representing the countries of the world, with enormously diverse cultures and different stages of socioeconomic and health development, must have a clear stewardship role. The moral authority of WHO could add to this. WHO should be able to mobilize relevant expertise and formulate an appropriate and effective policy on human genetics quickly and decisively. WHO should work closely with all stakeholders dealing with human genetics and other related fields of sciences, in validating authoritative sources of information, making them widely accessible, stimulating and facilitating dialogues to develop consensus regarding ELSI issues. In addition, WHO should provide guidance and other necessary support to the countries in strengthening capacities to deal with the positive and negative consequences of advances in genetics and related technologies. The Committee further debated on some of the ethical, legal, social and economic implications that might arise: Is personal DNA a private or a public matter? Should there be law that would prohibit cloning? How could law protect the misuse of genetic technologies, such as female foeticide? How to regulate international trade on human genetic materials? What legislative framework to be adopted for xeno-transplantation? Is it appropriate to adopt screening and testing without any means or interventions (treatment for genetic disorders) available in the health systems? How can other types of discrimination be forestalled, such as for employment or insurance purposes, as a result of carrier testing or predictive testing? In this context, personal decisions should be carefully distinguished from government policy. The Committee felt that human genomics should be health-driven rather than technology-driven. The Regional Office should disseminate all relevant information on health benefits as well as health impacts and ethical, legal and social implications of genomics. Attitudinal changes of policy-makers are important too, so were reforms in medical education, medical curricula in particular. Knowledge and technology on human genomics should be drawn into the framework of overall health development policy, to tackle health WHO South-East Asia Advisory Committee on Health Research Page 16 problems and improve health care, and also to promote good health and health-seeking behaviour. At the same time, the cost of health care must be contained. The ethical, legal and social implications are complex and difficult. Many medical professionals lack the ability to provide optimal genetic counselling, even on cases with single gene defects. While guidelines are considered necessary, they may not be sufficient to increase understanding of the complexity of ELSI in human genetics. Therefore interactive learning through action and improving medical curricula were required. There is a need to strengthen national capacity to cope with the complex issues of ELSI. Integration of the use of genetic technology in national health research systems should be a continuous and ongoing process. The Committee recognized the existing strengths and opportunities in the field of human genetics and genomics in the Region that could serve as an important resource for contributions to new knowledge in the Region and worldwide. The tremendous human genetic diversity that exists in the Region as well as whole of Asia and the Pacific could be a potential resource for the generation of knowledge in human genetics. It was also recognized that these contributions could be made even within the context of limited resources, due to much of the technology for human genome research being relatively inexpensive. There are national centres of expertise on human genetics that are already networking and sharing information in the Region, some of which could become potential regional resource centres. An urgent mapping of such centres should be carried out by WHO-SEARO with the assistance of ACHR members and national health research focal points. The contributions from these resource centres could enhance the WHO’s overall action plan on human genetics, through various means. WHO could encourage them in providing appropriate training, enhancing their action on community awareness, sharing knowledge and technology and facilitating dialogues. WHO could also use the technical expertise not only from institutions of developed countries but also from developing ones, both within and outside the Region, who are already investing larger resources in human genetics development. The Committee welcomed the regional and global consultations arranged by WHO for eliciting the responses on ELSI issues. It also requested WHO to facilitate the networking of existing centres of expertise in human genetics from within and outside the Region. This could be an efficient Report of the Twenty-sixth Session Page 17 mechanism to share relevant information and resources among the countries of the Region. Such centres could organize sustained training programmes to build capacity in appropriate genetic knowledge and technology to enable scientific as well as lay communities to understand and respond to ELSI of human genetics. Appropriate training would bring people together not only for the purpose of learning skills, but also for enhancing network activities. To demystify human genetics and genomics, relevant information should be disseminated to policy-makers, programme managers and other stakeholders. The use of genetic technology in health research should be interrelated with action contributing to overall development of health systems. Recommendations (1) WHO-SEARO should map and compile the profiles of national centres of expertise in the area of human genetics. After a thorough analysis, WHO- SEARO should identify potential institutes and utilize them as a network of regional resource centres on human genetics. (2) WHO-SEARO should conduct a situational analysis on the availability of clinical genetics services in the Region. WHO should identify the strengths and deficiencies in clinical services, education and training in this field, encourage the exchange of information and personnel, and advocate improvements. (3) WHO-SEARO should establish an expert group or scientific working group on human genetics, comprising expertise from various disciplines, in order to update the development of knowledge and technology related to human genetics as well as to provide necessary advice and guidance to Member Countries. (4) WHO-SEARO should also facilitate regional technical consultations, seminars and debates on ELSI of human genomics and health and also provide support to countries (especially least-developed ones) in responding to ELSI issues. (5) WHO-SEARO should prepare a paper on “Regional perspectives on human genomics and health”, taking into consideration the contributions made during presentations and debates at the 26th session of SEA-ACHR. The final paper should be submitted to WHO/HQ for its appropriate use. WHO South-East Asia Advisory Committee on Health Research Page 18 2.4 Proposed Criteria for Health Research Activities Supported by WHO in the South-East Asia Region (Agenda item 3.4) Dr Stephen Jost, Technical Officer, Health Systems Research, WHO-SEARO, briefly presented the background of the criteria that WHO was using for supporting health research activities. Taking into account of the work of WHO Scientific Working Group on setting Criteria for health research and new regional health research strategies, a revised set of criteria was suggested for the consideration by SEA-ACHR. As part of the health research promotion, technical and financial support had been provided by WHO to Member Countries. During the last few decades, a multitude of external and internal development partners have emerged, which were responsible for supporting national and international efforts for health research development. Some partners had considerably larger financial resources at their disposal than WHO. At the same time, an explosion of knowledge in the health, biological and material sciences, had taken place. Therefore, to keep pace with these complex changes, including competition of actors, the criteria for identifying WHO support for health research activities needed to be reviewed and updated. The Committee derived the following conclusions after thorough debate on various aspects of criteria for WHO to support health research. The criteria should be used in a two-step process. First, the proposals have to be appraised using three principles. At a second stage, a set of five criteria will be applied to assess relevance and support-worthiness. Principles The following three principles for supporting health research activities were proposed. The anticipated research results should be potentially relevant for: (1) Knowledge gains: Health research should contribute to knowledge gains in health and health development, in a wider perspective. This includes: � Creation of knowledge � Validation of knowledge Report of the Twenty-sixth Session Page 19 � Transformation of knowledge into best practice, including dissemination � Identification of gaps in health knowledge, and � Development of initiatives to address the gap(s). Health research should encompass research related to health and health-related sciences, such as biology, sociology, economics, information technology, etc. The research could also address original and innovative ideas. (2) Priority health problems: Health research must address specific priority health problems of one or more countries. Research may need to address the priority health problems of least developed countries of our Region particularly, of the poor and underprivileged population. Health research may also relate to the strategic directions provided by the national health policy and health research policies. It should also address cost-effective interventions. (3) Health research capacity: Health research should lead to capacity strengthening and contribute to sustainable human development. Capacity strengthening should be within the framework of a long-term national health research development plan or human resources development plan. Specific criteria (1) Technical relevance and rationale: The research hypothesis should ideally be: � Relevant to priority national or regional health problems, � Relevant to WHO’s programme of work, � Relevant to a gap in knowledge, � Innovative, definitive and testable proposition, � With an appropriate scientific background, and � Able to stand scientific rigour. WHO South-East Asia Advisory Committee on Health Research Page 20 (2) Research design and methodology: In general terms, research is defined as “finding the truth through a systematic way of thinking”. Before finalizing, the proposal must stand the following scrutiny: “Are research design and methodology appropriate for testing the hypothesis?” The proposal must be able to demonstrate that it contributes towards achieving objectives. (3) Ethical clearance: All health research proposals involving human subjects and/or experimental animals must be examined and approved by institutional and national ethical review committees, as appropriate to the country or countries concerned. (4) Sustainable health research capacity: The proposed health research should contribute to strengthening sustainable health research capacity. This entails strengthening skills in conducting or managing health research in relevant settings. Partnerships and networking among health research institutions that (are) responsible for health research, are encouraged in this context, especially, if the research proposals contain approaches for enhancing partnerships or developing strategic alliances. In some cases, the problem(s) would require regional collaborative efforts, being coordinated by WHO. In this regard, the followings might be taken into account: � Variations in the frequency and distribution of a disease in different geographical areas; � Difference in ecological settings that influence manifestations of a disease and response to health intervention, and � The opportunity it would provide to pool together the resources of the countries of the Region in studying common problems. (5) Utilization of research results: Health research should contribute to national or regional health development. The research results should be utilized to address knowledge gaps related to policy, technology or implementation. The research proposals should outline how anticipated results would be utilized to address any of these. The proposal should be able to differentiate between publication and other ways of utilization of research results. Report of the Twenty-sixth Session Page 21 The Committee noted that, in addition to setting the criteria for selecting the research proposal, there is a need to have a simple and effective mechanism for peer review and approval. There may be instances where research proposals might not ideally meet the principles and criteria. In such cases, WHO could facilitate the formulation, as appropriate, of health research proposals, within the priorities of WHO and national health research systems. In this context, the respective roles of WHO Representatives and of national health research councils should be clearly defined. Recommendation WHO-SEARO should update and make widely available, the “Information Booklet for Health Research Grant Application” taking into consideration the observations and suggestions made by SEA-ACHR. 2.5 Selected Global Health Research Activities (Agenda item 3.5) Dr Wang Yi-fei, Area Manager, HRP programme, WHO-HQ, briefly presented the activities carried out by the UNDP/UNFPA/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP). He summarized the salient challenges and strategies adopted in reproductive health research initiated by the global HRP programme, which was now integrated with the Department of Reproductive Health and Research, Family and Community Health Cluster, at WHO-HQ. The international community was committed to achieving a 75% reduction in maternal mortality rates/ratios between 1990 and 2015, infant mortality rates below 35 per 1000 live births by 2015. With widely divergent health status and development stages in the countries, including those of this Region, these global targets entailed real challenges. Health research initiatives of HRP involving some SEAR countries were also mentioned. For example, the HRP is organizing multi-centre studies on different aspects of reproductive health, such as epidemiology study on caesarean section (involving Bangladesh, Indonesia, Myanmar, Nepal, Sri Lanka and Thailand), a project on reproductive health of adolescent migrants in the Greater Mekong Region (involving Myanmar and Thailand), and a global study on Making Pregnancy Safer (involving Indonesia). WHO South-East Asia Advisory Committee on Health Research Page 22 The Committee appreciated the progress of implementation of HRP, which was in the process of becoming more integrated (between research and technical support to countries) and more comprehensive (including operational research, implementation and capacity strengthening). Members noted the new emphasis, which also places needs assessment as the starting point. Members underlined the vital importance of health research management. Strengthening managerial capacity was key to improving coordination and integration. 2.6 Global and Regional Coordination in Health Research (Agenda Item 3.6) (1) The Work of the RPC programme of WHO/HQ and Global ACHR Dr Tikki Pang, Director, Research Policy and Cooperation (RPC), WHO/HQ, outlined the progress in the work of the RPC programme at WHO headquarters, including the work of Global Advisory Committee on Health Research (GACHR). He highlighted the outcome and follow-up of the International Conference on Health Research for Development (ICHR), held in Bangkok, in October 2000, as well as the international awards (Rockefeller Foundation Awards) given to four centres and networks from this Region, for supporting cooperation in health research development. The post-ICHR strategies laid particular emphasis on country focus, capacity building and resources for health research. An important follow-up activity was the International Workshop on National Health Research Systems, held in Bangkok from 12-15 March 2001, which underlined the importance of strengthening national health research systems effectively. A joint effort was needed to develop a framework and indicators for evaluating the performance of national health research systems. While it would take a couple of years to achieve the analysis globally, the attempt to develop an evaluative framework and making a global analytical report could be a stepping stone towards global endeavour, for example a possible theme for World Health Report, Health research systems: knowledge for better health. Dr Tikki Pang also briefed members on salient developments of the Global ACHR. He reviewed the outcome of the last Global ACHR session held at Bangkok in October 2000, and looked forward to the coming tasks, Report of the Twenty-sixth Session Page 23 particularly those relating to the Special Report on Genomics and Health, which is due by late 2001. The nature of this special report would be a policy position document (rather than a guideline), targeted at a broad audience. The paper would highlight ELSI issues and how these could be properly responded to, especially from the perspectives of developing countries. Members further reiterated their concerns on ELSI of human genetics and expressed their opinion that WHO is probably the most appropriate agency to speak on behalf of humankind, in this matter. Members stressed the limitation of time during which to develop an appropriate international policy. There are possibilities that many public and private organizations and agencies at national and international levels might exert pressure and advocacy. Most of these external inputs might not be truly representing the public at large. They do not have the global character, which WHO holds strongly. Members noted with appreciation that WHO is preparing a draft work plan on ELSI issues. The Committee requested WHO to have wider participation and involvement from different walks of life. The establishment of regional resource centres on human genetics was highlighted again, as these would serve as technical and knowledge resource centres on any aspect of human genetics. Members also underlined the usefulness of attempting to determine the resource flows for health research in countries of the Region. Examples of Thailand, the Philippines and South Africa were cited. Recognizing the difficulty in obtaining good data, such efforts should be further encouraged with the assistance of national and regional networks. The Committee emphasized the promotion and strengthening of national health research systems as a vital future objective. It also recommended that countries should consider appropriate legislation to set aside a fixed proportion of the operative part of national health budget for promoting health research, for example 3%. This would have the advantage of not adversely affecting the national budget as it would be affected within the given budgetary ceiling. The consequences of such funding allocation would be both positive and important, serving to strengthen the national health research systems in a sustainable way. Members also pointed out that the poorer countries should undertake such action since they are even more in need of health research outcomes than others. The 3% budgetary resources would in effect be invested to spend the remaining 97% of the budgetary resources more wisely and effectively. The cumulative effect of doing so, year WHO South-East Asia Advisory Committee on Health Research Page 24 after year, would be enormous. It would help address the fundamental imbalances, both within the country and internationally. National health research systems everywhere would be strengthened in a lasting way, reducing brain drain. It would enhance a country’s ability to resolve its own problems as well as contributing to those, which cannot be addressed by one country alone. (2) Global Forum for Health Research Professor NK Ganguly (India) made a brief report on behalf of the Foundation Council of Global Forum for Health Research (GFHR) of which he is a member. He recalled the characteristics, constituents and the functions of the Foundation Council of GFHR. He reported that the fundamental problem of health research development in the world was the imbalance resources. Of US$ 70 billion estimated for investing in health research in 1998, less than 10% of such resources are spent on 90% of the world’s health problems (10/90 gap). The disease burdens of major communicable and noncommunicable diseases and selected risk factors (both expressed as % of total DALYs) were reviewed. A few examples on wide range of initiatives undertaken by GFHR were described briefly. The Forum’s efforts centred around three broad areas: � Market place for the 10/90 gaps: GFHR has organized a series of forums for global stakeholders of health research development. Global Forum 2, 3 and 4 were held in June 1998, June 1999 and October 2000, respectively. Forum 5 is scheduled to take place in October 2001. � Initiatives in key areas of health research: Recent development on international networking were reported: for example the Alliance for Health Policy and Systems Research, Medicines for Malaria Venture, Child Health and Nutrition Research, Public-Private Partnerships for Health, Sexual Violence against Women, Cardiovascular Health in Developing Countries, Global Tuberculosis Research Initiative. � Analytical work in priority setting: The analytical work focused on the burden of disease, cost-effectiveness, resource flows in health research, and development and application of a practical framework for priority setting. Report of the Twenty-sixth Session Page 25 The ACHR noted a number of health research initiatives by GFHR that were under preparation, such as in the area of road traffic injuries, child abuse, mental health and neurological disorders. Appreciation was expressed for the support extended by the Global Forum on health research initiatives of developing countries. As some of these initiatives were falling within the purview of global health development programmes supported by WHO, such as Stop TB and Roll Back Malaria, the work supported by the Forum at country and regional levels needed to be coordinated. Members noted that many diseases listed under the global disease burden were in fact diseases of poverty. The discussion referred to poverty itself as being a persistent health problem, which was proving quite resistant to disease-based control programmes. The misconception prevailed that poverty arose out of the problems of the poor. Poverty is a structural problem. There are structural impediments that keep the poor poorer. The Committee advised that the health research community should revisit this complex issue. Members also noted that the research community should identify the determinants of health (as opposed to the determinants of disease). This is in itself a wide, necessary and multidisciplinary area of research. 2.7 Promoting the Use of WHO Collaborating Centres and other Networks in SEAR (Agenda Item 3.7) Dr U Than Sein, Director-EIP, WHO-SEARO, gave an overview of the situation regarding WHO Collaborating Centres (WHOCC) in the South-East Asia Region. He stated that there were a total of 84 centres in the Region, representing seven per cent of the total of 1,188 centres existing globally. Of the 84 centres in the Region, only 29 fell within the designation period. A total of 55 centres had completed their designation periods but needed intensive review for redesignation. A total of 17 national institutions or networks had applied for designation as new WHOCC. Majority of existing WHOCC (more than 50%) were from India, and about one-fourth from Thailand. Even though the centres were almost equally distributed according to major WHO programme areas of work, some WHO priority programmes, such as Tobacco, did not have any collaborating centres being designated. Till now, there were one or two centres each in the area of Malaria, CVD, diabetes, or HIV/AIDS. WHO South-East Asia Advisory Committee on Health Research Page 26 Ms Poonam Khetrapal Singh, Deputy Regional Director and Director, Programme Management, WHO-SEARO, highlighted the importance of enhancing collaboration between existing centres and WHO technical units at all levels. She also underlined the crucial role of WHO Representatives and their field staff, who are in direct contact at the country level for monitoring and evaluating the progress of collaborative work as well as for identifying potential centres for designation. There is also a need to have closer relationships between the WHOCC and national programme managers for which WHO might play a facilitating role. The Committee noted that there is an urgent need to enhance the capacity of the national institutions and networks which are responsible for programme activities that fall within the Organization-wide priority areas and to select and designate these centres as WHOCC. There is a need to increase awareness by the national health authorities as well as responsible WHO technical units for identifying appropriate national institutions or network which have the potential for technical excellence and which have been closely collaborating with WHO for some years. A concerted effort is also required to evaluate the work of existing centres in order to expedite the redesignation process. The Committee noted the review on WHOCC by the Regional Office and requested WHO to widely distribute the new information document on WHOCC issued by WHO-HQ. Members agreed that an increasing number of WHOCC was required for effective implementation of WHO programmes at all levels as well as for improving research and development activities in the respective areas. While efforts should be made to redesignate existing centres, there was an urgent need to select and designate new WHOCC, especially in areas such as genetics and genomics, ethics and health research, development of health research systems, and biotechnology. The SEA-ACHR members should assist in identifying appropriate centres from their respective countries. It was also suggested that designation could be done not just a centre, but also network or networks of centres for complex technical areas such as genomics or biotechnology. WHO should also streamline its designation process, including the enhanced role of WHO Representatives. The subject of promoting WHOCC in the Region was also suggested for discussion at the next meeting of The Report of the Twenty-sixth Session Page 27 Regional Director with its country representatives. Members felt that the WHOCC needed to work closely with other institutions within the same country or with those from other countries. They also needed to actively promote research and development activities, training, and information sharing. WHO and Member States should jointly carry out periodic review and evaluation of the work of the collaborating centres. SEA-ACHR should also review periodically the work of the WHOCC. Since networking was going to be an important instrument for capacity building and promoting research, WHO-SEARO and its development partners should facilitate the mobilization of appropriate resources for these networks to undertake effective research and development activities. Recommendations (1) Member Countries and WHO should identify appropriate national institutions and networks, which have been collaborating closely with WHO for health development, in order to designate new WHO collaborating centres (WHOCC). The revised WHO guidelines for WHO collaborating centres should be made available widely. Information on distribution of WHOCC by region and by different technical subject areas should also be widely accessible. (2) Periodic joint monitoring and systematic evaluation of collaborative activities between WHO and the centres have to be undertaken by responsible technical units of WHO, including the WHO Representative concerned. An annual meeting of WHOCC at national level, especially for countries with a sizable number of centres (such as India, Indonesia and Thailand) would help stakeholders to promote the effective use of these centres. (3) WHO-SEARO should strengthen the networks of WHOCC as important instruments for capacity building and promoting health research. WHO should work closely with development partners to facilitate the mobilization of appropriate resources for the network to undertake effective research and development activities. WHO South-East Asia Advisory Committee on Health Research Page 28 3 CLOSING SESSION Prior to commencing the closing session, the Chairperson of the 26th SEA- ACHR invited comments from the participants on the methods of work of the Committee, with a view to making future sessions more effective. Members appreciated the improved method of work that had already been adopted for the past several sessions, such as selection of special subjects for scientific debate, review of the progress of the work of the RPC programme at all levels, report on the progress of implementation of the global and regional ACHR recommendations, and sharing of information with the global health research programmes. Members also appreciated the concise background papers and the short presentations with ample time for discussion. In some cases, the group discussion and the panel debate provided an opportunity for eliciting ideas and developing final conclusions. Some SEA-ACHR members still felt that background papers should be prepared and shared in advance to enable them to study and bring ideas to the meeting. To this effect, they suggested that the topics for debate at the next session should be decided well in advance. It was also suggested that thematic subject(s) relevant to the Region as well as the host country should be chosen for a half-day session. It would also be appropriate to invite members of local scientific community to join the debate. This will ensure wider understanding of the subject as well as derivation of strategies and policies that might further influence health research development in the respective country. A number of topics were suggested for the next SEA-ACHR sessions, such as environment: ecology and health; health research and non- communicable diseases (CVD or stroke at young age); decentralization in health; expansion of health insurance; health research in arsenic poisoning; or any other topics of cutting-edge research issues addressing the unfinished agenda. The Committee requested the Regional Director to select the most appropriate topic for scientific debate, in consultation with Members. The Deputy Regional Director assured that their views would be considered seriously while formulating the provisional agenda for the next session, which would be provided to them in advance. The necessary background papers will also be prepared and circulated as early as possible. The Committee also noted the invitation of the SEA-ACHR members from Bangladesh to host the next session of SEA-ACHR in Dhaka. Chairperson then summarized the discussions, conclusions and recommendations of the Committee, based on the draft report as prepared by the Report-drafting Report of the Twenty-sixth Session Page 29 Group. Members carefully reviewed the draft report at plenary section-by- section and endorsed with minor modifications. Chairperson, in his closing remarks, reiterated that the inaugural and opening addresses by the Hon. Minister of Health and Education, Royal Government of Bhutan, and by the WHO Regional Director, had provided the strategic directions for health research development in the Region. He emphasized that the Region had rich resources in scientific and technical development, which could be utilized by appropriate networking. Chairperson underscored the role of SEA-ACHR in assisting WHO as well as Member Countries, in enhancing networking mechanisms and mobilizing the resources that would help in strengthening national health research systems. He expressed high appreciation for the valuable contributions to the Committee’s deliberations rendered by the Regional Director and the Deputy Regional Director. He thanked the Royal Government of Bhutan, for providing an “enabling environment” for the session, thus contributing effectively to the fruitful outcome of the meeting. Chairperson also thanked the local Organizing Committee as well as the WHO country office for the excellent arrangements, including field visits. Chairperson then commended the Report-drafting group and the Secretariat for the comprehensive documentation and technical support. Dr Sangay Thinley, Secretary, Health and Education, Royal Government of Bhutan and Co-chairperson of the 26th SEA-ACHR, thanked the Regional Director for organizing the meeting in Bhutan for the first time. He expressed appreciation to the Report-drafting group for their timely submission. He reiterated that the meeting clearly provided an impetus to the health research programme in Bhutan. Deputy Regional Director, Ms Poonam Singh, in her closing remarks, thanked the SEA-ACHR members and special invitees for their valuable inputs to the meeting. She congratulated Members and the Secretariat for concluding the session successfully. She also assured ACHR that the Regional Director would be apprised of the deliberations and concerns. Following appreciation expressed by Members, Chairperson closed the twenty-sixth session of the WHO South-East Asia Advisory Committee on Health Research. WHO South-East Asia Advisory Committee on Health Research Page 30 Annex 1 INAUGURAL ADDRESS BY DR UTON MUCHTAR RAFEI REGIONAL DIRECTOR, WHO SOUTH-EAST ASIA REGION I welcome you all to the twenty-sixth session of the WHO South East Asia Advisory Committee on Health Research (SEA-ACHR). It is a great honour to hold this session in the Kingdom of Bhutan. I sincerely thank the Royal Government for agreeing to host this meeting in this capital city of Thimphu. Indeed, it is the first time that the Advisory Committee on Health Research is meeting in this country, so rich in culture and tradition, which adds to the pleasure and privilege of addressing you. I extend a warm welcome to the distinguished members, both new and existing, as well as special invitees, dignitaries from the Royal Government, and our colleagues from WHO headquarters. Ladies and gentlemen, we are living in a world ever more interdependent. In order to respond more effectively to a rapidly evolving global environment, WHO developed a corporate strategy. The visions and values of Health for All inspire the corporate strategy. Its main message is to place health in a broader context. Knowledge and research are central to WHO’s corporate strategy. Setting the agenda for, and stimulating, research and development is indeed one of the core functions of the Organization. We need to manage information to assess health situations and trends. We need to improve our tools and our evidence to evaluate the performance of health systems. We need to focus our work so that tried and tested technologies actually reach the poor and vulnerable. We need to apply, and where necessary develop and improve, appropriate guidelines and technologies: for disease prevention and control, for more effective reduction of risks, and for more efficient health care management and service delivery. Research and development are essential to formulate healthy public policies and to underpin health sector reforms in countries. WHO Corporate Strategy is also a process of organizational development. It entails changes in the way we work, attempting to be broader based, more interactive and more focused. Accordingly, the role of the global Report of the Twenty-sixth Session Page 31 Advisory Committee on Health Research has been reviewed, including the relationship with its regional counterparts and other international health research bodies. The global ACHR is now operating with a much-improved balance of both disciplines and gender, providing strategic advice to WHO on a continuing basis. We, in this Region, have been actively involved in this process. At times, we have even been a step ahead. Last year, I reconstituted the WHO South-East Asia Advisory Committee on Health Research with fresh terms of reference and broader membership. The long-felt need, to bring together research policy-makers and research implementers in the Region, has been well reflected. Membership is now more representative of the countries in our Region. The Committee has a wider range of expertise than before, recognizing the complex nature of health research and the enormity of the challenges to public health we face in this Region. This was already been reflected in the Committee’s recommendations last year. These covered important areas such as health research management, regional priorities in HIV-AIDS research, regional vaccine research and development policy, operational research in reproductive health, and operational guidelines for ethical review committees. Much effort has been invested in following up these recommendations and putting the practicable into action. A full report is with you. I invite continuing attention by countries to these areas of long-term importance. Distinguished colleagues, the landmark Declaration for Health Development in the 21st century, adopted by the Honourable Health Ministers of this Region in 1997, was noteworthy as it provided guidance for future action. Subsequently, the Regional Conference on Public Health in the 21st century, held in Calcutta at the end of 1999, and the International Conference on Health Research, held in Bangkok in October 2000, added further strategic directions for health development in the Region. Let me try and summarize some of the important challenges we face, and how research and knowledge would clearly be necessary to address them. The first challenge is ensuring basic health services for all, especially the poor, women and vulnerable groups. The needy often do not get access. Health is one of the key factors in breaking debilitating cycles of poverty. Knowledge and new technologies have helped develop tools for addressing conditions of poverty. We need research into the means for tackling these conditions – new drugs and commodities, strategies for health promotion, disease prevention and control, efficient systems accessible to those in need. This is urgent. The second challenge is creating conditions which promote health and self- reliance. Research can help us understand health-seeking behaviour, as well WHO South-East Asia Advisory Committee on Health Research Page 32 as risk-reducing behaviour and lifestyles. It is important to understand popular perceptions if interventions are to be effective, especially in areas such as unsafe food or sexual behaviour, as well as problems related to alcohol or tobacco. The importance of health education and promotion is clear. These are important pre-conditions to empower people, especially women, to look after their own health. The third challenge concerns closing the gaps and inequities in health in our societies. An evaluation of the Health for All strategies clearly showed the increasing inequities within and between countries. We need to develop and sustain health systems, which improve health outcomes equitably and efficiently. Knowledge must help us develop and sustain health systems, which are responsive to legitimate needs as well as financially fair. The fourth challenge is to uphold and enforce health ethics, and to protect and preserve the dignity and worth of the human being, within and between countries. We need to strengthen ethics in health practices, in research as well as in our approach to public health. This is likely to be of vital importance in a rapidly globalized world in the 21st century. The fifth challenge remains placing health at the centre of development. Developing and sustaining healthy public policies is vital to provide an effective health dimension to social, economic, environmental and development policies. This requires health policy research to analyze what has happened, or what is happening, in different political, socioeconomic and cultural contexts. Effective decentralization is an important strategy in our Region, as it transforms vertical programmes into integrated programmes with bottom-up planning. Changes are also needed in leadership patterns and accountability, in feedback and training, in laws and regulations. Let us further consider the special problems of our Region which impact health. We are still faced with a formidable population problem. Illiteracy, especially female illiteracy, is still a major impediment to development in general and to health development in particular. Maternal mortality rates in some countries of our Region are among the highest in the world. Demographic, socioeconomic and epidemiological transitions have resulted in a double burden of communicable and noncommunicable diseases. Distinguished participants, I would urge you therefore to take a fresh look on how research and knowledge can best contribute to address the challenges we face. Let us try to do so in an integrated way. This is why we have placed an item to review and update ‘Regional health research strategies’ on the agenda of this session. Our existing strategies, which served us well, were developed in 1993. They require revision in the light of changes which have taken place since then and considering the challenges ahead. We Report of the Twenty-sixth Session Page 33 shall also review the criteria for health research activities supported by WHO, including those developed and proposed by this Committee in 1976, many of which are still valid. We have also included an item for scientific debate, on defining regional perspectives in human genetic research. This is in response to the Director- General’s recent request to the Global ACHR to study and report on the ethical, legal and social implications of human genome research. We are delighted to have present here eminent scientists on human genetics and biotechnology from the Region - as well as outside - to discuss this important topic. In order to successfully tackle the challenges facing the Region, priorities need to be set and exchange of experience encouraged, for instance, regarding utilization of research results, priority setting, strengthening ethical review, or the linkage between research and decision making. In this way, we can respond effectively to regional needs and keep with the global impetus. Sustained research efforts and good research management are required not only to address the unfinished agenda but also the challenges ahead. There is little doubt that we always seek new knowledge but let us not ignore existing knowledge. We have to ask ourselves why - all too often - proven, affordable and available technologies or approaches are still not applied to benefit peoples’ health? This question merits an urgent response. Mutually beneficial partnerships need to be forged between countries and regions. I would urge the members of this ACHR to maximize the potential of our partners. These include, among others, WHO collaborating centres, national centres of expertise, the Council on Health Research for Development, the Global Forum on Health Research, regional health research networks, various international health research foundations and trusts. We look forward to working with a broad range of partners to achieve common goals. We should learn from successes and failures. We should learn from successful research efforts and institutions and promote the application of appropriate tools and interventions. WHO is ready to facilitate and promote various networks for health and health research development, to help address the challenges ahead. Distinguished members of ACHR, I invite you to consider and recommend how best to do this in a practical way. In conclusion, I wish you success in your deliberations and look forward to the outcome of this important meeting. Thank you. WHO South-East Asia Advisory Committee on Health Research Page 34 Annex 2 LIST OF PARTICIPANTS Dr Harun-ar-Rashid Director Bangladesh Medical Research Council Mohakhali, Dhaka, Bangladesh Tel. 8828396 & 8811395 (O) Fax. 880-2-8828820 E-mail: bmrc@citechco.net Professor Shahjada Chowdhury Director National Institute of Preventive and Social Medicine Mohakhali, Dhaka, Bangladesh Telefax: 08802-8821236 E-mail: director@nipsom.agni.com Dr Sangay Thinley Secretary, Ministry of Health and Education Royal Government of Bhutan Thimphu, Bhutan Tel. 00975-2-326627 Fax: 00975-2-324649 E-mail: Sangay@Druknet.net.bt Dr Kim Myong Dok Director Department of Science and Technology Chollima Street, Central District, Pyongyang, DPR Korea Tel: 850-2-381-1811 Ex.8067 Fax: 850-2-381-4077 Professor N.K. Ganguly Director-General Indian Council of Medical Research New Delhi, India Tel. 6517204 (O) and 6493145 Res. E-mail: icmrhgdo@sanandnicin Dr Indrani Gupta Reader, Institute of Economic Growth Health Policy Research Centre University Enclave New Delhi-7 India Tel. 7257288/74247365 Fax: 7257410 E-mail: indrani@ieg.ernet.id Prof. Umar Fahmi Achmadi (Unable to attend),Director-General Communicable Diseases and Environmental Health Ministry of Health Jakarta Indonesia Tel. 62-21-4209930 E-mail: umar@indosat.net.id Dr Ramdan Panigoro PhD Director, Health Research Unit Padjadjaran University School of Medicine Hasan Sadikin Hospital Bandung,, West Java Indonesia Tel. 62-22-2038218 and 2030776 E-mail: ramdan@fk.unpad.ac.id Dr Agus Suwandono Secretary, National Institute of Health Research and Development Jakarta Indonesia Tel. 62-21-4243122 Fax: 62-21-4243933 E-mail: dragus@indosat.net.id Report of the Twenty-sixth Session Page 35 Dr Soeharsono Soemantri Senior Researcher National Institute for Health Research and Development Ministry of Health Jakarta Indonesia Tel. 62-021-42871604 Fax: 62-021-4244226 E-mail: harsono@litbang.depkes.go.i and ssoem@dprin.go.id Professor Eddy Pranowo Chairman, Department of Public Health and Preventive Medicine Medical Faculty, University of Airlangga, Surabaya Indonesia Tel. 62-031-5020251 (Ext. 134) Fax: 5027830 Dr Myint Lwin (Unable to attend) Director-General Department of Medical Research (Upper Myanmar) Mandalay, Myanmar Professor Paing Soe (Unable to attend) Director-General Department of Medical Research (Lower Myanmar) Yangon, Myanmar Tel: 095-01-284419 Fax: 251514 Prof. Mathura Prasad Shrestha Professor & Chair Resource Centre for Primary Health Care Bagbajar, P.O. Box 117 Kathmandu Nepal E-mail: mathura@healthnet.org.np Professor Gopal Prasad Acharya Chairman, Nepal Health Research Council Kathmandu, Nepal Tel: 977-1-254220 Res:977-1-424601; Fax: 977-1-262469 E-mail: gacharja@healthnet.org.np Dr K.C.S. Dalpatadu Deputy Director-General (Planning) Ministry of Health and Indigenous Medicine Colombo, Sri Lanka Tel: 94-1-692694; Fax: 94-1-679997 E-mail: ddgp@sri.lank.net Professor Dulitha N. Fernando Prof. of Community Medicine and Head Department of Community Medicine Faculty of Medicine, University of Colombo Colombo, Sri Lanka Tel: 695300, 696243; Fax: 691581 E-mail: cmcol@slt.lk; sunithf@sltnet.lk Dr Pakdee Pothisiri (Unable to attend) Director-General Department of Medical Sciences Ministry of Health, Bangkok Thailand Professor Porapan Punyaratabandhu Associate Professor Faculty of Public Health Mahidol University Bangkok Thailand Tel: 662-245-9673 Fax: 662-248-3299 E-mail: phppy@mucc.mahidol.ac.th Professor Chitr Sitthi-amorn College of Public Health Chulalongkorn University Bangkok, Thailand E-mail: chitr@cph.chula.ac.th Professor Chantapong Wasi Associate Professor Department of Microbiology Faculty of Medicine Siriraj Hospital, Mahidol University Bangkok, Thailand Tel: 662-4113111-4197068 Fax: 6624184148 and 4110263 E-mail: sicws@mahidol.ac.th WHO South-East Asia Advisory Committee on Health Research Page 36 Special Invitees Professor Robert Williamson Director, The Murdoch Institute, Royal Children's Hospital Flemington Road Parkville, VIC 3052 Australia. Fax : 61-3-9348-1391 E-mail: williamb@cryptic.rch.unimelb.edu.au" Prof. S.S. Aggarwal Prof and Head Genetics and Immunology Director, Sanjay Gandhi Post Graduate Institute of Medical Sciences Rai Baraily Road Lucknow-226003, India Tele : Off – 0522-440732 / 440112 Res - 322505; 371387 / Fax Res – 440973 E-mail: ssa@sgpgi.ac.in Dr U Soe Thein Deputy Director-General Department of Medical Research (Lower Myanmar), Myanmar E-mail: dmrlowerm@mptmail.net.mm Dr. Lalji Singh Director Centre for Cell and Molecular Biology Uppal Road Hyderabad 500 007, India Phone: 040 717 3487; Fax: 040-717 1252 E-mail: lalji@ccmb.ap.nic.in Professor Prawase Wasi Professor of Medicine Emeritus (Former Chairman, SEA-ACHR) Bangkok, Thailand Dr Astuti Soedarto Suparmanto Director-General National Institute for Health Research and Development (NIHRD) Ministry of Health Jakarta, Indonesia Tel: 62-21-4245214 and Fax: 4243933 Others Dr Kim Song Ha Interpreter Director, Department of Scientific Guidance Academy of Medical Sciences C/o NPO DPR Korea Observers Dr Dorji Wangchuk, Superintendent Jigme Dorji Wangchuk National Referra Hospital Royal Government of Bhutan Dr Ugen Dophu Deputy Superintendent Jigme Dorji Wangchuk National Referral Hospital Royal Government of Bhutan Dr Tenzin Penjor, Joint Director Public Health Division, Ministry of Health and Education Royal Government of Bhutan Mr Thinley Dorji Policy Planning Division Ministry of Health and Education Royal Government of Bhutan Mr Kado Zangpo Assistant Programme Officer Research Unit Health Department Royal Government of Bhutan Dr B.R. Giri Medical Specialists Jigme Dorji Wangchuk National Referral Hospital Mr Pemba Wangchuk Head Policy and Planning Division Ministry of Health and Education Royal Government of Bhutan Report of the Twenty-sixth Session Page 37 WHO Secretariat WHO/HQ Dr Tikki Pang Director, RPC E-mail: pangt@who.ch Dr Wang Yi-fei Area Manager for Asia and the Pacific Technical Support to Countries Department of Reproductive Health and Research. (RHR) E-mail: wangy@who.ch Regional Office Dr Uton Muchtar Rafei Regional Director Ms Poonam K. Singh Deputy Regional Director/Director Programme Management Dr Than Sein Director Evidence and Information for Policy E-mail-thansein@whosea.org Dr Adik Wibowo Regional Adviser, RPC E-mail: wibowoa@whosea.org Mr A.M. Meliala Scientist, RPC; E-mail: melialaa@whosea.org Dr Stephan P. Jost, Technical Officer Health Systems Research E-mail: josts@whosea.org Ms Rekha Anand Secretary, RPC E-mail: Anandr@whosea.org Country Office Dr Orapin Singhadej WHO Representative Dr Kunzang Jigmi National Medical Officer, Telemedicine Mr Norbhu Wangchuk National Professional Officer (Programme) Ms Rinji Om Senior Administrative Assistant (Programme) Mr Dorji Wangchuk Administrative Assistant Ms Dechen Choden Senior Secretary WHO South-East Asia Advisory Committee on Health Research Page 38 Annex 3 TERMS OF REFERENCE To advise the Regional Director in the following areas: � Formulation and implementation of health research policies and health research agenda in the Region in line with the resolutions and policy guidance of World Health Assembly, Executive Board and the Regional Committee, and also within the overall framework of the global WHO research policy. � Coordination and harmonization of health research activities of various national health research bodies/councils/departments, institutions with those of WHO, with the purpose of strengthening of national research capability and research management for health development � Development, management and improvement of health research information system, including research monitoring and evaluation, for evidence-based decision-making � Collection, analysis, and dissemination of existing health research findings on emerging scientific knowledge and technology, with a view to promote and foster research application and practices at the national and institutional level. (As adopted at the 25th session of SEA-ACHR, Bali, Indonesia, April 2000) Report of the Twenty-sixth Session Page 39 Annex 4 AGENDA 1. INAUGURAL SESSION 2. INTRODUCTORY SESSION 2.1 Introductory remarks by Dr Uton Muchtar Rafei, Regional Director, WHO South- East Asia Region 2.2 Introduction of participants 2.3 Nomination of Co-Chairperson 2.4 Opening remarks by Chairperson 2.5 Adoption of agenda and working schedule 3. BUSINESS SESSION 3.1 The Work of Regional Research Policy and Cooperation (RPC) Programme of the WHO South-East Asia Region, 2000-2001 3.2 Review of Regional Health Research Strategies 3.3 Regional Perspectives in Human Genetics 3.4 Review of Criteria for Health Research Activities Supported by WHO in the countries of the Region 3.5 Selected global health research activities: UNDP/UNFPA/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP) 3.6 Global and regional coordination in health research � Work of RPC/HQ and Global ACHR � Global Forum for Health Research 3.7 Promoting the use of WHO Collaborating Centres as well as other networks of research institutions and national centres of expertise in the countries of the Region 3.8 Adoption of Conclusions and Recommendations 4. CLOSING SESSION WHO South-East Asia Advisory Committee on Health Research Page 40 Annex 4 (contd.) Working Schedule Date Morning session(0830 – 1230 hrs) Afternoon session(1400 – 1700 hrs) 17 Apr 2001 (Tuesday) 1. Inaugural session 2. Introductory session 3. Business session 3.1 The Work of the Regional Research Policy and Cooperation (RPC) Programme of South-East Asia Region, 2000-2001 3.2 Review of Regional Health Research Strategies – Presentation of Draft prepared by the Expert Group – Group Work (Discussions on Draft) 18 Apr 2001 (Wednesday) 3.3 Regional Perspectives in Human Genetics (Scientific debate) Introduction by Director (EIP), followed by Panel Discussions (Prof. R. Williamson, Prof. S.S. Aggarwal, Dr Lalji Singh and Prof. Prawase Wasi) Moderator (Prof. Chantapong Wasi) 3.2 Review of Regional Health Research Strategies – Presentation of Group Works – Discussions and recommendations 19 Apr 2001 (Thursday) 3.4 Review of Criteria for Health Research activities supported by WHO in the Countries – Discussions and Recommendations 3.6 Global and Regional Coordination in Health Research – Work of RPC/HQ and Global ACHR 3.5 Selected Global Health Research Activities: – UNDP/ UNFPA/ WHO/ World Bank Special Programme of Research, Development and Research Training in Human Reproduction HRP) 3.6 Global and Regional Coordination in Health Research (contd.) - Global Forum for Health Research 3.7 Promoting the use of WHO Collaborating Centres as well as other networks of research institutions and national centres of expertise in the countries of the Region – Discussions and recommendations Note: Meeting of Report Drafting Group (1700 hrs) 20 Apr 2001 (Friday) Opening session (0900-1130) Discussions at market places 3.8 Adoption of Conclusions and Recommendations (1130 hrs) 4. Closing session (1230 hrs) Report of the Twenty-sixth Session Page 41 Annex 5 LIST OF WORKING DOCUMENTS Title Document No. Terms of Reference SEA/ACHR/26/1 Provisional Agenda SEA/ACHR/26/2 Proposed Working Schedule SEA/ACHR/26/3 List of participants SEA/ACHR/26/4 Review of the Work of Research Policy and Cooperation (RPC) Programme of the South-East Asia Region, 2000-2001 SEA/ACHR/26/5 (Agenda item 3.1) Review of Regional Health Research Strategies SEA/ACHR/26/6 (Agenda item 3.2) Regional Perspectives in Human Genetics SEA/ACHR/26/7 (Agenda item 3.3) Review of Criteria for Health Research Activities supported by WHO in the Countries of the Region SEA/ACHR/26/8 (Agenda item 3.4) UNDP/UNFPA/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP) SEA/ACHR/26/9 (Agenda item 3.5a) UNDP/World Bank/ WHO Special Programme for Research and Training in Tropical Diseases (TDR) SEA/ACHR/26/10 (Agenda item 3.5b) Global and Regional Coordination in Health Research SEA/ACHR/26/11 (Agenda item 3.6) Promoting the Use of WHO Collaborating Centres as well as other networks of research institutions and national centres of expertise in the countries of the Region SEA/ACHR/26/12 (Agenda item 3.7) WHO South-East Asia Advisory Committee on Health Research Page 42 Annex 6 LIST OF INFORMATION DOCUMENTS Related to Agenda item 3.1 – The work of Research Policy and Cooperation (RPC) Programme of South-East Asia Region, 2000-2001 1. Follow up of recommendations of 25th ACHR and Scientific Working Groups 1(a). Country Wise Address List of Members of Expert Advisory Panels from South-East Asia Region Related to Agenda item 3.2 – Review of Regional Health Research Strategy 2. Health Research for Development: the continuing challenge. A discussion paper prepared for the International Conference on Health Research for Development, Bangkok, 10-13 October 2000 3. Regional Consultative Process Asia 4. Annecy Meeting Report 5. Health Research Strategies of the South-East Asia Region, WHO-SEARO, 1993 Related to Agenda item 3.3 – Regional Perspective in Human Genetics 6. Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services, World Health Organization Human Genetics Programme 1998 7. The Human Genome Expanding the possibilities for health (Draft 2) January 2001 WHO Planning Group Discussion Document 8. World Health Organization Management of Noncommunicable Diseases – Workplan for the ethical, legal and social implications of genetics – a draft for discussion March 2001 9. ACHR Special Report on Genomics and Health, WHO – Geneva, 22 March 2001 Report of the Twenty-sixth Session Page 43 Related to Agenda item 3.4 – Review of Criteria for Health Research activities supported by WHO in the countries of the Region 10. Abstract from relevant portions of SEAR Handbook 11. Guidelines for filling up Research Application Forms 12. Guidelines for evaluation of research application for support Related to Agenda item 3.6 – Global and Regional coordination in health research 13. Report of the Global ACHR meeting, October 2000 Related to Agenda item 3.7 – Promoting the use of WHO Collaborating Centres as well as other networks of research institutions and national centres of expertise in the countries of the Region 14. WHO Collaborating Centres – General Information

© World Health Organization 2001 This document is not a formal publication of the World Health Organization (WHO), and all rights are reserved by the Organization. The document may, however, be freely reviewed, abstracted, reproduced or translated, in part or in whole, but not for sale or for use in conjunction with commercial purposes. The views expressed in documents by named authors are solely the responsibility of those authors . Page iii CONTENTS Page 1. INAUGURAL SESSION.....................................................................................1 2. INTRODUCTORY AND BUSINESS SESSIONS (Agenda items 2 and 3).............3 2.1 The Work of the Regional Research Policy and Cooperation Programme of the WHO South-East Asia Region, 2000-2001 (Agenda item 3.1) ................................................................5 2.2 Strategies for Health Research Development in the WHO South-East Asia Region (Agenda item 3.2) ....................................8 2.3 Regional Perspectives in Human Genetics: Scientific Debate.................... (Agenda item 3.3).................................................................................11 2.4 Proposed Criteria for Health Research Activities Supported by WHO in the South-East Asia Region (Agenda item 3.4).........................18 2.5 Selected Global Health Research Activities (Agenda item 3.5)...............21 2.6 Global and Regional Coordination in Health Research (Agenda item 3.6).................................................................................22 2.7 Promoting the Use of WHO Collaborating Centres and other Networks in SFAR (Agenda item 3.7)...........................................25 3. CLOSING SESSION........................................................................................28 Annexes 1. Inaugural Address by Dr Uton Muchtar Rafei, Regional Director, WHO South-East Asia Region ........................................................................30 2. List of Participants..........................................................................................34 3. Terms of Reference........................................................................................38 4. Agenda and Working Schedule......................................................................39 5. List of Working Documents............................................................................41 6. List of Information Documents.......................................................................42 Page 1 1. INAUGURAL SESSION The twenty-sixth session of the WHO South-East Asia Advisory Committee on Health Research (SEA-ACHR), was held at the Banquet Hall in Thimphu, Bhutan, from 17th to 20th April 2001. In his inaugural address, Dr Uton Muchtar Rafei, Regional Director, WHO South-East Asia Region, thanked the Royal Government of Bhutan for hosting for the first time a meeting of SEA-ACHR. He welcomed ACHR members and special invitees and highlighted WHO’s Corporate Strategy, the main message of which was to place health in a broader context. He said that knowledge and research were central to this strategy. Setting the agenda for, and stimulating research and development was one of the core functions of the Organization. There was a need to assess health situations and trends to obtain evidence for improving the performance of health systems. Research and development were essential for formulating healthy public policies and to underpin health sector reforms in the countries. There was also a need to focus on how tried and tested technologies could reach the poor and vulnerable, on development and improvement of appropriate guidelines and technologies for disease prevention and control and on efficient health care management and service delivery. The Regional Director stated that the newly constituted SEA-ACHR had brought together research policy-makers and research implementers and now had a wider range of expertise to deal with the complex nature of health research and to meet the enormous challenges of public health in the Region. The first of these challenges was how to ensure basic health services for all, especially for the poor, women and vulnerable groups. The second one was how to create conditions, which would promote health and self-reliance where research could help understand health-seeking behaviour. These were important pre-conditions for empowering people, especially women, and for looking after their own health. The third challenge was how to close the gaps and inequities in health in today’s societies. There was a need to develop and sustain health systems that would improve health outcomes equitably and WHO South-East Asia Advisory Committee on Health Research Page 2 efficiently. Fourthly, there was a need for concerted effort to uphold and enforce health ethics and to protect and preserve the dignity and worth of the human being, within and between countries. There was also a need to strengthen ethics in health practices, in research as well as in the approach to public health in the present scenario of globalization. Development and sustenance of healthy public policies was vital for providing an effective health dimension to social, economic, environmental and developmental policies. The Regional Director urged SEA-ACHR to take a fresh look on how research and knowledge could best contribute to address the challenges of the Region. In the current session, ACHR would be reviewing and updating the ‘regional health research strategies’ developed in 1993. He also called upon the Committee to define regional perspectives in human genetics, as a response to the recent request of the WHO Director-General, made to the Global ACHR, to study and report on the ethical, legal and social implications of human genome research. He underscored the need to strengthen networks of WHO Collaborating Centres and of national centres of expertise, and to maximize and tap the potential of partners. While learning from the success of research efforts and institutions, WHO should continue to facilitate and promote various networks for health and health research development, to help address the challenges that lay ahead (for full text see Annex 1). Inaugurating the meeting, HE Lyonpo Sangay Ngedup, Minister for Health and Education, Royal Government of Bhutan, expressed his deep appreciation to the WHO Regional Director for choosing Bhutan to host the 26th session of SEA-ACHR. He said that the selection was especially appropriate, since Bhutan was trying its best to strengthen its capability both in health research management and promotion. Recognizing the importance of health research for effective decision-making, the Royal Government of Bhutan had established a Research and Epidemiology unit within the Department of Health. He commended WHO for providing technical and financial support to its research capacity strengthening activities as well as for bringing the countries of the Region together and facilitating collaboration among them. The Honourable Minister stressed the need for utilizing the technical and financial resources available within the Region and exploiting the talent available to advance health care delivery. He stressed that since the Region carried the major burden of communicable and noncommunicable diseases, there would be every reason to enhance health research. In this Report of the Twenty-sixth Session Page 3 regard, he requested the Regional Director to strengthen and accelerate collaborative activities, utilizing WHO Collaborating Centres and the national centres of expertise. There was also a need to develop new centres of expertise so that countries could utilize their service, research and training. Since Bhutan still needed to strengthen its health research management and capacity, he requested WHO to work closely with the Ministry of Health in promoting and developing health research in the country. The Honorable Minister stated that it was time for health research to reach the grassroots level. Research should be demystified and health research results be made accessible to all. In this context, he requested ACHR to work towards building confidence and promoting exchange of information. He agreed with the Regional Director of the need to put emphasis on ethics in health research. He urged ACHR to seriously consider this matter and share the concerns with the world and also guide researchers in the Region. He said that Bhutan was at the preliminary stage of health research development and could only generate baseline data. It would be a long time before the country was able to develop its health research system. As this year is being devoted to mental health, ACHR members should embark on health research, in the area of utilizing traditional ways such as Yoga and meditation to deal with mental illnesses. The countries of this Region should also tap the wisdom of their ancient civilizations for national health development. Given the challenges that existed in Member Countries, he urged WHO to take a lead. 2. INTRODUCTORY AND BUSINESS SESSIONS (Agenda items 2 and 3) Seventeen members of SEA-ACHR, 7 special invitees as well as 9 members of the WHO Secretariat headed by the Regional Director attended the twenty- sixth session. In addition, 7 senior public health and research staff from the Ministry of Health and Education, Royal Government of Bhutan, attended as observers (see Annex 2 for List of Participants). The Regional Director, Dr Uton Muchtar Rafei, in his introduction to the business session, highlighted the future policy and strategic challenges of health research in the Region. He said that updating the regional health research strategies in the light of new health challenges and opportunities was WHO South-East Asia Advisory Committee on Health Research Page 4 a high priority. The International Conference on Health Research Development (ICHR), organized by WHO and other health research development partners, held at Bangkok last year, agreed upon future actions for the development of health research in the global context. In order to fit in with the global conceptual framework and action plans, he had established an expert group that had developed a draft document on regional strategies for health research development. He requested ACHR to critically review and suggest improvements to this document, so that it could be submitted to the 54th session of the SEA Regional Committee in September 2001. The topic on the regional perspectives in human genetics was of regional and global concern. While taking note of the knowledge on human genetics and its applications for health, there was a need to focus on the ethical, legal, social, cultural and economic implications, particularly for developing countries. The debate during this session would provide the regional dimension to the global effort. Enhanced use of WHO Collaborating Centres and national centres of expertise would ensure the utilization of the available expertise within the Region for scientific development. As already recommended by earlier sessions of SEA-ACHR, there was a need to focus on national health research systems, in order to improve the health status of the people, especially in reducing inequality and improving the efficiency and effectiveness of health systems. There was a need to strengthen planning, coordination and management of national health research, and also in improving ethical review mechanisms and processes and building research capacity through networks and training. An expert group had developed, in early April 2001, a draft “Regional Vaccine Policy”, that would be widely shared with development partners and Member Countries. Professor NK Ganguly (India), Chairperson of SEA-ACHR, warmly welcomed participants and expressed his appreciation to the Regional Director for giving him the renewed opportunity to chair this regional scientific body. He said that he would carry out his duties in accordance with the terms of reference of SEA-ACHR (Annex 3). Dasho (Dr) Sangay Thinley (Bhutan) was unanimously nominated Co-Chairperson of the twenty-sixth session. A report-drafting group, consisting of Professor Dulitha Fernando (Sri Lanka), Professor Porapan Punyarathbandhu (Thailand) and Dr Agus Suwandono (Indonesia), was constituted. The Committee unanimously adopted the Agenda and the Working Schedule (Annex 4). Report of the Twenty-sixth Session Page 5 2.1 The Work of the Regional Research Policy and Cooperation Programme of the WHO South-East Asia Region, 2000-2001 (Agenda item 3.1) Dr. Adik Wibowo, Regional Adviser for Research Policy and Cooperation (RPC), WHO-SEARO, reported on progress of the RPC programme during 2000-2001. She said that the regional RPC programme of WHO focused on promotion of ethics in health research, strengthening national health research capacity and collaboration, networking and partnerships with global, international and national health research institutions, organizations and forums. The Regional Office was working on the development of a database on health research as a mechanism for generating knowledge for wider use and for monitoring the progress of WHO-supported research projects. The Committee reiterated that knowledge generated from research itself was not sufficient to improve health. A triangular approach to deal with difficult problems, as explained, might be useful. The triangle has three components: (1) the creation of relevant knowledge, through health research, at one angle; (2) social movement (social learning) at another; and (3) political involvement as third angle. The creation of relevant knowledge is crucial but not in itself sufficient. It must interact with two others, i.e. social movement and political involvement. Without relevant knowledge, social movement and political involvement could not become stronger and might even deviate from their rightful paths. Relevant knowledge also has to be translated into forms and languages, which could empower the public. Actions on social mobilization would demystify the knowledge and put it into public concerns. When public concerns are created and awareness of knowledge is built within the community, the third component of the triangular approach, i.e. political involvement will come into the picture. Politicians and decision-makers have the authority and responsibility to create and use relevant knowledge and also to derive and push social learning processes. All three sides of triangular approach are to be in equilibrium and the lack or imbalance of this “triad” could lead to failure in solving difficult problems. The Committee underlined that the objective of the national health research systems could only be achieved by putting knowledge creation as a whole, incorporating social and movements and political involvement. WHO South-East Asia Advisory Committee on Health Research Page 6 In order to be able to face the challenges in health in the 21st century, as a result of developments in international and national health research systems, an in-depth review of the existing regional health research strategies was carried out by a group of experts. The new framework has been submitted to the current session for discussion and recommendations. The final draft incorporating the suggestions of SEA-ACHR would be submitted to the 54th session of the SEA Regional Committee in September 2001 for review and endorsement. Ethical issues in health research are a key component of health research management and the work on ethics in health research is one of the main regional activities. The results of a study on ethics and education (Multi- centred baseline study on ethical values in teaching Institutions/hospitals in six SEAR countries), carried out by the Regional Office in collaboration with the South-East Asia Health Ethics Network (SEAHEN), were published in three volumes in 2000. These documents were widely available for use as reference documents as well as for developing further studies. The South-East Asia and the Western Pacific Regional Offices, in collaboration with national ethical review committees of some member countries from these Regions, established a Forum for Ethical Review for South East Asia and Pacific (FERCAP) in early 2000. A training course was organized by WHO and FERCAP, in Thailand in July 2000, in collaboration with TDR/HQ. Ethics in health research recently received greater attention at the country level. National review workshops and training courses were conducted as a follow- up of the regional training. The document on operational guidelines for national and institutional ethics committees that review biomedical research was developed by TDR/HQ and had been used as a reference document by the countries of the SEA Region. Some countries have translated these guidelines into their local languages for wider use. A few countries, such as India, Nepal, Indonesia and Thailand, have reviewed and updated their national ethical guidelines for health research. The Committee felt that strengthening research capacity is an important component for improving the functioning of national health research systems and concerted effort is needed in this area. It noted with satisfaction that four health research networks, out of a total of 10 recipients of “International Award for Health Research Capacity Strengthening”, sponsored by WHO and the Rockefeller Foundation, were from the South-East Asia Region. Significant Report of the Twenty-sixth Session Page 7 steps have been taken on various intercountry initiatives to strengthen research management and training. A few countries had put their efforts in infrastructure development. In the context of mainstreaming of health research within the framework of overall health development, the Committee emphasized the need to expand health research capacity strengthening to the technical areas such as health economics, social and political arena, biotechnology, agriculture, education and industries, etc. This would ensure sustainable generation and utilization of knowledge. The Committee stressed the continuing need to strengthen effective management of health research in the countries. The activities would include improving the knowledge and skills in research management and leadership, advocacy, communication and decision-making process, targeted to research managers. This skill development would have dual benefits – one, to create an enabling environment for effective functioning of the national health research systems, i.e. stewardship, planning, monitoring, feedback and evaluation; and two, to correct the chronic gaps between research and policy-making, especially in relation to the generation and use of knowledge. The Scientific Working Groups had addressed these issues and the recommendations should now be translated into actions at the country level. The management of health research could also help to accelerate the process of mobilizing society’s concerns and obtaining political commitment. An example is the success of Thailand adopting legislation to use 2% of tobacco and alcohol tax-revenue for health promotion. The Committee further debated on how research results could be effectively utilized and how it was given serious attention. The application of scientific rigor and the requirement of peer reviews for publication in scientific journals are stringent. To use the health research results for policy-making required different skill and modalities. Development of an Internet web site is one of the mechanisms for increased access to new knowledge. One constraint is that many researchers lack the ability to translate scientific research results into policy recommendations. The Committee stressed the importance of the role of WHO in elucidating and fostering public debates. The Committee reiterated that the development of effective and efficient national health research systems could be linked with the overall framework of national policy on science and technology as well as of national health development. This linkage would secure the contributions of health WHO South-East Asia Advisory Committee on Health Research Page 8 research results towards overall development. The Committee agreed that the regional RPC programme should continue to work on the principle of providing evidence-based information for policy. It should focus on strengthening the health research needs of the countries. It should continue to improve national capacity for formulation of research policies and priorities, and utilization of research results. The activities should also bridge the gap between researchers and policy-makers in order to support and increase the dissemination of information, networking and twinning and promoting partnerships for achieving cost-effective work in research. Recommendation WHO, in collaboration with national health research councils or analogous bodies, should update the profiles of the national health research systems, using a common framework, and also undertake a regional analysis to identify the strengths and weaknesses of each system. 2.2 Strategies for Health Research Development in the WHO South-East Asia Region (Agenda item 3.2) The regional health research strategies for South-East Asia were developed in 1993. At the start of the 21st century, new challenges and opportunities emerged and there was an urgent need to review and revise these strategies to address these challenges. The future research agenda and action plans for the next two decades were thoroughly debated and agreed upon at the International Conference on Health Research for Development (ICHR) held in Bangkok 2000. In the light of the above the Regional Director, constituted an expert group1 to review the existing regional health research strategies and prepare a revised strategy. The expert group met at the Regional Office, in New Delhi, in end- March 2001 and developed a draft document on strategies for health research 1 The expert group consisted of: a) ACHR members - Professor NK Ganguly, Professor Chitr-Sitthi Amorn and Professor Dulitha Fernando; b) Senior Health Research Scientists - Professor Aung Than Batu, Professor CAK Yasudien and Dr Wiput Poolchareon and c) WHO Secretariat – Dr Than Sein, Dr Adik Wibowo, Mr AM Meliala and Dr SP Jost. Report of the Twenty-sixth Session Page 9 development in South-East Asia Region (Document SEA/ACHR/26/6). The group felt that there was a need to shift the focus of attention of the draft paper. The 1993 WHO Document on regional health research strategies dealt with the identification of research priorities, with particular reference to emerging health problems, primary health care and health-for-all, and it provided a wide range of actions on conducting research. The document developed by the expert group would emphasize the development and strengthening of health research systems in the countries. The Committee then reviewed the draft document (in group works and at plenary sessions), and provided in-depth analysis. The following changes were suggested: Objectives: The main purpose of the revised regional health research strategy paper should be to provide a framework for the countries and their development partners, enabling them to review and plan their health research development efforts using system approaches. The framework would help the countries to identify a series of actions for improving their national health research systems. National health research systems: The definitions of (a) health systems, (b) health research and (c) health research systems should be clarified in simple and practical terms. Values and principles as well as key objectives should be defined for each of these, with a clear indication of the relationships among them. It is reaffirmed that the purpose of health research systems is to provide appropriate knowledge and tools to the health systems in order to improve equity, quality and efficiency of health. Health research has its own values, i.e. generating and validating knowledge and information; monitoring and evaluating policy and ensuring that policies are translated into practice to improve health; developing new and appropriate technologies; and contributing to development. The Committee endorsed the nine key objectives of the national health research system, emphasizing more on planning, management, coordination, mobilizing resources and monitoring and evaluation. It also looked into the functions and architecture of the national health research systems using a few country examples. The relationship of systems context, governance, generation and use of knowledge, leading to key challenges in health research development was debated. One of WHO South-East Asia Advisory Committee on Health Research Page 10 the processes at the national level could be the formation of “a national health research forum” which might allow wider participation in bringing people together to discuss issues towards a unified concept at national and sub-national levels. The document elucidates a wide variety of health research systems already in existence as well as their changing roles. It also suggested an independent working environment for effective maintenance and sustenance of scientific rigor. Key challenges in health research system development: The Committee endorsed the four key challenges to health research development; viz. (a) health research values, i.e. equity and ethics; (b) research environment, i.e. inadequate resources, multiple actors, deficient research culture; (c) sustainable health research systems, i.e. the changing relationships between stakeholders, shortage of research capacity and financing; and (d) knowledge production and application, i.e. deficiency of forums (mechanisms or platforms) at national or institutional level to promote and clarify health research inputs to the functions of the health systems and policies. Strategies: The five main strategies for strengthening national health research systems development are:(a) management of knowledge as public goods and exploring the frontiers, (b) situation analysis of national health research systems; (c) strengthening capacity in technical and managerial areas of health research; (d) creation of an enabling research environment and enhancing partnerships, and (e) governance at the country as well as international levels. Strategies to action: The Committee agreed on the need for a situation analysis of the existing health research systems in the countries. Such an analysis would generate information for better understanding of the strengths and weaknesses of national health research systems, which would help develop and strengthen their own systems. The situation analysis should go beyond mere description, but facilitate appropriate cross-country comparison and promote linkages between countries. SEARO may need to work with the ACHR members and national health research institutions to develop an appropriate framework and tools. SEARO should also facilitate regional partnerships in order to strengthen national health research systems in the countries. The systems approach embodied in the new regional health research strategies is likely to be profoundly important for implementation and sustainability. Report of the Twenty-sixth Session Page 11 The next steps: The Committee noted that the draft document would be further revised based on the inputs from members. The expert group is scheduled to reconvene in July 2001 to produce a final draft, which will then be submitted to the 54th session of the SEA Regional Committee, in September 2001, for review and endorsement. The countries would use the new regional strategy document to strengthen national research systems. Periodic monitoring and final evaluation are to be undertaken. The Committee proposed that the Chairperson present a special report to the Global ACHR meeting in June 2001, on the work done by SEA-ACHR on the development of regional health research strategy. It also recommended promotion of the systems approach on strengthening national health research development, in other WHO Regions as well. The Committee also proposed that the title of the paper be changed to “Strategies for strengthening national health research systems in WHO South-East Asia Region”. Recommendations (1) The Committee endorsed the actions taken by WHO-SEARO to finalize the paper on Strategies for strengthening the national health research systems in the WHO South-East Asia Region. It also requested SEARO to further improve the document, taking into account the suggestions and modifications proposed at the meeting as well as contributions received at later consultations. (2) The Committee endorsed further promotion of the systems approach on the strengthening of national health research systems in the countries of the Region as well as in other WHO regions. The latter would need to be undertaken by submitting a special report to the Global ACHR. 2.3 Regional Perspectives in Human Genetics: Scientific Debate (Agenda item 3.3) Dr U Than Sein, Director, Department of Evidence and Information for Policy, WHO-SEARO, provided a short introduction on the scientific debate on regional perspectives in human genetics. He briefly covered historical overview from the era of classical genetics, reverse genetics, genomics, to the WHO South-East Asia Advisory Committee on Health Research Page 12 new era of genetics. He recalled that the landmark “Human Genome Project” had commenced in 1988 and the anticipated sequencing of the human genome was virtually completed - several years ahead of schedule. WHO at all levels had responded to the challenge posed by these developments. The Director-General had recently requested the Global Advisory Committee on Health Research to prepare a “Special Report on Genomics and Health” by the end of 2001. It was timely that the Regional Director requested the 26th SEA-ACHR to consider regional perspectives on the ethical, legal and social implications (ELSI) of human genetics. In addition, the Committee was requested to consider how and in what way the Region would be contributing to the Global ACHR’s special report on genomics and health. The results of the SEA-ACHR debate would also be useful in identifying actions for the countries. Special invitees of experts in this field, Professor R Williamson, Professor SS Aggarwal, Dr Lalji Singh and Professor Prawase Wasi, had shared their views, concerns and perspectives, on the development of human genetics, with particular reference to the Human Genome Project as well as the understanding of ELSI and the role of WHO. Professor R Williamson, Director, The Murdoch Institute, Australia, made a presentation on salient aspects of the Human Genome Project (HGP), with present and future implications. He stated that HGP was international and public in nature. The outcome of HGP would benefit not only health but also agricultural and biotechnological fields. However, it must be applied ethically. A variety of usage of human genome information in medical practice had already been established such as diagnosis (including prenatal), prediction, and therapy. However, the gene therapy was still in an experimental stage since the human body had natural defensive mechanisms towards foreign DNA. It was estimated that there might be more than 6000 single gene disorders, most of which extremely rare. In some cases, the relevant gene had been found and mutations identified. The use of knowledge at the personal level might be higher than its current commercial value. Most of the people would suffer and die from major non-communicable diseases, such as cancer, heart disease, diabetes, and mental disorders, which were multi-factorial or polygenetic diseases caused by several genes supplemented by the Report of the Twenty-sixth Session Page 13 environment and behaviour. This underlined the importance and understanding of human genetics. It was essential that appropriate ways were identified to make awareness and also to utilize the already available knowledge on human genetics effectively, quickly and ethically to achieve public health benefit, especially for the benefit of poor and disadvantaged groups such as women, tribal peoples and those with disabilities. It was time for both developing and developed countries to move forward together on accelerated development of human genetics, and enable all countries equal access to knowledge and technology on human genetics. At present, much of the knowledge and technology, being gained in human genetics, were simple and affordable and also easily transferable to the countries in need. It was also essential to carefully review the ethical, legal and social implications of human genetics within the socio-cultural and economic context of the countries. There was a need to carefully distinguish between the personal decisions of individuals (or groups of individuals) and those of government (national policies). An appropriate ethical and legal framework on human genetics is needed at both individual country and international levels. WHO being an international health agency had a unique role to build consensus on both positive and negative implications of human genetics. WHO should come forward and take the leading role in bringing scientific and public health communities, health planners and policy-makers to a common forum. Professor S.S. Agarwal, Head, Medical Genetics Department, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India, in his presentation laid special emphasis on the clinical perspective of human genetics. He stressed that the subject had been misunderstood and neglected and recommended a change in the attitude of health care providers, keeping in mind that genetic diseases were not rare and a lot could be done for further improving the deciphering of the human genome sequence. He said that human genetics was closely related to human welfare; genetic diseases affected not only the individual concerned, but also their family and the society at large. The emergence of genomics was bound to lead to a paradigm shift in the practice of medicine. It would bring in a new era of predictive and molecular medicine, including the application of pharmacogenomics and toxicogenomics. He stated that genetic diseases were already of public health importance even in several developing countries, WHO South-East Asia Advisory Committee on Health Research Page 14 which would further increase with better control of environmental and nutritional disorders. An investment in human genetics would provide large returns in the form of primary prevention f diseases and promotion of human health. Dr Lalji Singh, Director, Centre for Cell and Molecular Biology, Hyderabad, India, emphasized the technological development in relation to human genetics from the perspective of a developing country. He said that after completion of the sequencing of human genome the future challenge would be to determine the function of most of the genes that was presently unknown. Considering the fact that future medicine was going to be individualized based on the genotype of the individual, it was important that each country developed new technologies such as DNA microarray, proteomics, bioinformatics, functional genomics, pharmacogenomics and toxicogenomics. Since these technologies were very expensive, it would be difficult to provide than to every research institution and university. Therefore, there was a need to create resource centres within and between the countries of the Region and to network them. The South-East Asia Region was very rich in biodiversity. There were large families and consanguinity in this Region which would be very valuable for identifying and mapping of new disease- causing genes. This region could effectively contribute to generating new knowledge in the post-genomic era because of its inherent strength in information technology and its great potential in the emerging area of biotechnology and bioinformatics. The particularly emphasized creation of such resource centres and networking of the collaborating institutions in the South-East Asian region. In his presentation, Professor Prawase Wasi, Professor Emeritus and the Former Chairman of SEA-ACHR, emphasized the perspective on genomics and health especially with respect to future implications on the use of knowledge and technology in the developing countries. Newer medical practices such as predictive and preventive health care are now available in developed countries, with direct application of knowledge gained in human genetics, and these practices are likely to be expanding rapidly in developing countries. They would give rise to complex issues related to the ethical, legal and social implications. Such issues would range from DNA as private property, enquiry of insurance companies on genetic susceptibility for premium purposes, cloning of humans and the shift from population diversity to population homogeneity. Report of the Twenty-sixth Session Page 15 Professor Chantapong Wasi (Thailand) moderated the subsequent panel discussion, to elicit the views of SEA-ACHR on regional perspectives on ELSI of human genetics and how these views could contribute to the special report of the Global ACHR. The members highlighted the unique role of WHO in addressing the issues related to both positive and negative impacts of knowledge, technology and application in the post-genomic era. WHO, being representing the countries of the world, with enormously diverse cultures and different stages of socioeconomic and health development, must have a clear stewardship role. The moral authority of WHO could add to this. WHO should be able to mobilize relevant expertise and formulate an appropriate and effective policy on human genetics quickly and decisively. WHO should work closely with all stakeholders dealing with human genetics and other related fields of sciences, in validating authoritative sources of information, making them widely accessible, stimulating and facilitating dialogues to develop consensus regarding ELSI issues. In addition, WHO should provide guidance and other necessary support to the countries in strengthening capacities to deal with the positive and negative consequences of advances in genetics and related technologies. The Committee further debated on some of the ethical, legal, social and economic implications that might arise: Is personal DNA a private or a public matter? Should there be law that would prohibit cloning? How could law protect the misuse of genetic technologies, such as female foeticide? How to regulate international trade on human genetic materials? What legislative framework to be adopted for xeno-transplantation? Is it appropriate to adopt screening and testing without any means or interventions (treatment for genetic disorders) available in the health systems? How can other types of discrimination be forestalled, such as for employment or insurance purposes, as a result of carrier testing or predictive testing? In this context, personal decisions should be carefully distinguished from government policy. The Committee felt that human genomics should be health-driven rather than technology-driven. The Regional Office should disseminate all relevant information on health benefits as well as health impacts and ethical, legal and social implications of genomics. Attitudinal changes of policy-makers are important too, so were reforms in medical education, medical curricula in particular. Knowledge and technology on human genomics should be drawn into the framework of overall health development policy, to tackle health WHO South-East Asia Advisory Committee on Health Research Page 16 problems and improve health care, and also to promote good health and health-seeking behaviour. At the same time, the cost of health care must be contained. The ethical, legal and social implications are complex and difficult. Many medical professionals lack the ability to provide optimal genetic counselling, even on cases with single gene defects. While guidelines are considered necessary, they may not be sufficient to increase understanding of the complexity of ELSI in human genetics. Therefore interactive learning through action and improving medical curricula were required. There is a need to strengthen national capacity to cope with the complex issues of ELSI. Integration of the use of genetic technology in national health research systems should be a continuous and ongoing process. The Committee recognized the existing strengths and opportunities in the field of human genetics and genomics in the Region that could serve as an important resource for contributions to new knowledge in the Region and worldwide. The tremendous human genetic diversity that exists in the Region as well as whole of Asia and the Pacific could be a potential resource for the generation of knowledge in human genetics. It was also recognized that these contributions could be made even within the context of limited resources, due to much of the technology for human genome research being relatively inexpensive. There are national centres of expertise on human genetics that are already networking and sharing information in the Region, some of which could become potential regional resource centres. An urgent mapping of such centres should be carried out by WHO-SEARO with the assistance of ACHR members and national health research focal points. The contributions from these resource centres could enhance the WHO’s overall action plan on human genetics, through various means. WHO could encourage them in providing appropriate training, enhancing their action on community awareness, sharing knowledge and technology and facilitating dialogues. WHO could also use the technical expertise not only from institutions of developed countries but also from developing ones, both within and outside the Region, who are already investing larger resources in human genetics development. The Committee welcomed the regional and global consultations arranged by WHO for eliciting the responses on ELSI issues. It also requested WHO to facilitate the networking of existing centres of expertise in human genetics from within and outside the Region. This could be an efficient Report of the Twenty-sixth Session Page 17 mechanism to share relevant information and resources among the countries of the Region. Such centres could organize sustained training programmes to build capacity in appropriate genetic knowledge and technology to enable scientific as well as lay communities to understand and respond to ELSI of human genetics. Appropriate training would bring people together not only for the purpose of learning skills, but also for enhancing network activities. To demystify human genetics and genomics, relevant information should be disseminated to policy-makers, programme managers and other stakeholders. The use of genetic technology in health research should be interrelated with action contributing to overall development of health systems. Recommendations (1) WHO-SEARO should map and compile the profiles of national centres of expertise in the area of human genetics. After a thorough analysis, WHO- SEARO should identify potential institutes and utilize them as a network of regional resource centres on human genetics. (2) WHO-SEARO should conduct a situational analysis on the availability of clinical genetics services in the Region. WHO should identify the strengths and deficiencies in clinical services, education and training in this field, encourage the exchange of information and personnel, and advocate improvements. (3) WHO-SEARO should establish an expert group or scientific working group on human genetics, comprising expertise from various disciplines, in order to update the development of knowledge and technology related to human genetics as well as to provide necessary advice and guidance to Member Countries. (4) WHO-SEARO should also facilitate regional technical consultations, seminars and debates on ELSI of human genomics and health and also provide support to countries (especially least-developed ones) in responding to ELSI issues. (5) WHO-SEARO should prepare a paper on “Regional perspectives on human genomics and health”, taking into consideration the contributions made during presentations and debates at the 26th session of SEA-ACHR. The final paper should be submitted to WHO/HQ for its appropriate use. WHO South-East Asia Advisory Committee on Health Research Page 18 2.4 Proposed Criteria for Health Research Activities Supported by WHO in the South-East Asia Region (Agenda item 3.4) Dr Stephen Jost, Technical Officer, Health Systems Research, WHO-SEARO, briefly presented the background of the criteria that WHO was using for supporting health research activities. Taking into account of the work of WHO Scientific Working Group on setting Criteria for health research and new regional health research strategies, a revised set of criteria was suggested for the consideration by SEA-ACHR. As part of the health research promotion, technical and financial support had been provided by WHO to Member Countries. During the last few decades, a multitude of external and internal development partners have emerged, which were responsible for supporting national and international efforts for health research development. Some partners had considerably larger financial resources at their disposal than WHO. At the same time, an explosion of knowledge in the health, biological and material sciences, had taken place. Therefore, to keep pace with these complex changes, including competition of actors, the criteria for identifying WHO support for health research activities needed to be reviewed and updated. The Committee derived the following conclusions after thorough debate on various aspects of criteria for WHO to support health research. The criteria should be used in a two-step process. First, the proposals have to be appraised using three principles. At a second stage, a set of five criteria will be applied to assess relevance and support-worthiness. Principles The following three principles for supporting health research activities were proposed. The anticipated research results should be potentially relevant for: (1) Knowledge gains: Health research should contribute to knowledge gains in health and health development, in a wider perspective. This includes: � Creation of knowledge � Validation of knowledge Report of the Twenty-sixth Session Page 19 � Transformation of knowledge into best practice, including dissemination � Identification of gaps in health knowledge, and � Development of initiatives to address the gap(s). Health research should encompass research related to health and health-related sciences, such as biology, sociology, economics, information technology, etc. The research could also address original and innovative ideas. (2) Priority health problems: Health research must address specific priority health problems of one or more countries. Research may need to address the priority health problems of least developed countries of our Region particularly, of the poor and underprivileged population. Health research may also relate to the strategic directions provided by the national health policy and health research policies. It should also address cost-effective interventions. (3) Health research capacity: Health research should lead to capacity strengthening and contribute to sustainable human development. Capacity strengthening should be within the framework of a long-term national health research development plan or human resources development plan. Specific criteria (1) Technical relevance and rationale: The research hypothesis should ideally be: � Relevant to priority national or regional health problems, � Relevant to WHO’s programme of work, � Relevant to a gap in knowledge, � Innovative, definitive and testable proposition, � With an appropriate scientific background, and � Able to stand scientific rigour. WHO South-East Asia Advisory Committee on Health Research Page 20 (2) Research design and methodology: In general terms, research is defined as “finding the truth through a systematic way of thinking”. Before finalizing, the proposal must stand the following scrutiny: “Are research design and methodology appropriate for testing the hypothesis?” The proposal must be able to demonstrate that it contributes towards achieving objectives. (3) Ethical clearance: All health research proposals involving human subjects and/or experimental animals must be examined and approved by institutional and national ethical review committees, as appropriate to the country or countries concerned. (4) Sustainable health research capacity: The proposed health research should contribute to strengthening sustainable health research capacity. This entails strengthening skills in conducting or managing health research in relevant settings. Partnerships and networking among health research institutions that (are) responsible for health research, are encouraged in this context, especially, if the research proposals contain approaches for enhancing partnerships or developing strategic alliances. In some cases, the problem(s) would require regional collaborative efforts, being coordinated by WHO. In this regard, the followings might be taken into account: � Variations in the frequency and distribution of a disease in different geographical areas; � Difference in ecological settings that influence manifestations of a disease and response to health intervention, and � The opportunity it would provide to pool together the resources of the countries of the Region in studying common problems. (5) Utilization of research results: Health research should contribute to national or regional health development. The research results should be utilized to address knowledge gaps related to policy, technology or implementation. The research proposals should outline how anticipated results would be utilized to address any of these. The proposal should be able to differentiate between publication and other ways of utilization of research results. Report of the Twenty-sixth Session Page 21 The Committee noted that, in addition to setting the criteria for selecting the research proposal, there is a need to have a simple and effective mechanism for peer review and approval. There may be instances where research proposals might not ideally meet the principles and criteria. In such cases, WHO could facilitate the formulation, as appropriate, of health research proposals, within the priorities of WHO and national health research systems. In this context, the respective roles of WHO Representatives and of national health research councils should be clearly defined. Recommendation WHO-SEARO should update and make widely available, the “Information Booklet for Health Research Grant Application” taking into consideration the observations and suggestions made by SEA-ACHR. 2.5 Selected Global Health Research Activities (Agenda item 3.5) Dr Wang Yi-fei, Area Manager, HRP programme, WHO-HQ, briefly presented the activities carried out by the UNDP/UNFPA/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP). He summarized the salient challenges and strategies adopted in reproductive health research initiated by the global HRP programme, which was now integrated with the Department of Reproductive Health and Research, Family and Community Health Cluster, at WHO-HQ. The international community was committed to achieving a 75% reduction in maternal mortality rates/ratios between 1990 and 2015, infant mortality rates below 35 per 1000 live births by 2015. With widely divergent health status and development stages in the countries, including those of this Region, these global targets entailed real challenges. Health research initiatives of HRP involving some SEAR countries were also mentioned. For example, the HRP is organizing multi-centre studies on different aspects of reproductive health, such as epidemiology study on caesarean section (involving Bangladesh, Indonesia, Myanmar, Nepal, Sri Lanka and Thailand), a project on reproductive health of adolescent migrants in the Greater Mekong Region (involving Myanmar and Thailand), and a global study on Making Pregnancy Safer (involving Indonesia). WHO South-East Asia Advisory Committee on Health Research Page 22 The Committee appreciated the progress of implementation of HRP, which was in the process of becoming more integrated (between research and technical support to countries) and more comprehensive (including operational research, implementation and capacity strengthening). Members noted the new emphasis, which also places needs assessment as the starting point. Members underlined the vital importance of health research management. Strengthening managerial capacity was key to improving coordination and integration. 2.6 Global and Regional Coordination in Health Research (Agenda Item 3.6) (1) The Work of the RPC programme of WHO/HQ and Global ACHR Dr Tikki Pang, Director, Research Policy and Cooperation (RPC), WHO/HQ, outlined the progress in the work of the RPC programme at WHO headquarters, including the work of Global Advisory Committee on Health Research (GACHR). He highlighted the outcome and follow-up of the International Conference on Health Research for Development (ICHR), held in Bangkok, in October 2000, as well as the international awards (Rockefeller Foundation Awards) given to four centres and networks from this Region, for supporting cooperation in health research development. The post-ICHR strategies laid particular emphasis on country focus, capacity building and resources for health research. An important follow-up activity was the International Workshop on National Health Research Systems, held in Bangkok from 12-15 March 2001, which underlined the importance of strengthening national health research systems effectively. A joint effort was needed to develop a framework and indicators for evaluating the performance of national health research systems. While it would take a couple of years to achieve the analysis globally, the attempt to develop an evaluative framework and making a global analytical report could be a stepping stone towards global endeavour, for example a possible theme for World Health Report, Health research systems: knowledge for better health. Dr Tikki Pang also briefed members on salient developments of the Global ACHR. He reviewed the outcome of the last Global ACHR session held at Bangkok in October 2000, and looked forward to the coming tasks, Report of the Twenty-sixth Session Page 23 particularly those relating to the Special Report on Genomics and Health, which is due by late 2001. The nature of this special report would be a policy position document (rather than a guideline), targeted at a broad audience. The paper would highlight ELSI issues and how these could be properly responded to, especially from the perspectives of developing countries. Members further reiterated their concerns on ELSI of human genetics and expressed their opinion that WHO is probably the most appropriate agency to speak on behalf of humankind, in this matter. Members stressed the limitation of time during which to develop an appropriate international policy. There are possibilities that many public and private organizations and agencies at national and international levels might exert pressure and advocacy. Most of these external inputs might not be truly representing the public at large. They do not have the global character, which WHO holds strongly. Members noted with appreciation that WHO is preparing a draft work plan on ELSI issues. The Committee requested WHO to have wider participation and involvement from different walks of life. The establishment of regional resource centres on human genetics was highlighted again, as these would serve as technical and knowledge resource centres on any aspect of human genetics. Members also underlined the usefulness of attempting to determine the resource flows for health research in countries of the Region. Examples of Thailand, the Philippines and South Africa were cited. Recognizing the difficulty in obtaining good data, such efforts should be further encouraged with the assistance of national and regional networks. The Committee emphasized the promotion and strengthening of national health research systems as a vital future objective. It also recommended that countries should consider appropriate legislation to set aside a fixed proportion of the operative part of national health budget for promoting health research, for example 3%. This would have the advantage of not adversely affecting the national budget as it would be affected within the given budgetary ceiling. The consequences of such funding allocation would be both positive and important, serving to strengthen the national health research systems in a sustainable way. Members also pointed out that the poorer countries should undertake such action since they are even more in need of health research outcomes than others. The 3% budgetary resources would in effect be invested to spend the remaining 97% of the budgetary resources more wisely and effectively. The cumulative effect of doing so, year WHO South-East Asia Advisory Committee on Health Research Page 24 after year, would be enormous. It would help address the fundamental imbalances, both within the country and internationally. National health research systems everywhere would be strengthened in a lasting way, reducing brain drain. It would enhance a country’s ability to resolve its own problems as well as contributing to those, which cannot be addressed by one country alone. (2) Global Forum for Health Research Professor NK Ganguly (India) made a brief report on behalf of the Foundation Council of Global Forum for Health Research (GFHR) of which he is a member. He recalled the characteristics, constituents and the functions of the Foundation Council of GFHR. He reported that the fundamental problem of health research development in the world was the imbalance resources. Of US$ 70 billion estimated for investing in health research in 1998, less than 10% of such resources are spent on 90% of the world’s health problems (10/90 gap). The disease burdens of major communicable and noncommunicable diseases and selected risk factors (both expressed as % of total DALYs) were reviewed. A few examples on wide range of initiatives undertaken by GFHR were described briefly. The Forum’s efforts centred around three broad areas: � Market place for the 10/90 gaps: GFHR has organized a series of forums for global stakeholders of health research development. Global Forum 2, 3 and 4 were held in June 1998, June 1999 and October 2000, respectively. Forum 5 is scheduled to take place in October 2001. � Initiatives in key areas of health research: Recent development on international networking were reported: for example the Alliance for Health Policy and Systems Research, Medicines for Malaria Venture, Child Health and Nutrition Research, Public-Private Partnerships for Health, Sexual Violence against Women, Cardiovascular Health in Developing Countries, Global Tuberculosis Research Initiative. � Analytical work in priority setting: The analytical work focused on the burden of disease, cost-effectiveness, resource flows in health research, and development and application of a practical framework for priority setting. Report of the Twenty-sixth Session Page 25 The ACHR noted a number of health research initiatives by GFHR that were under preparation, such as in the area of road traffic injuries, child abuse, mental health and neurological disorders. Appreciation was expressed for the support extended by the Global Forum on health research initiatives of developing countries. As some of these initiatives were falling within the purview of global health development programmes supported by WHO, such as Stop TB and Roll Back Malaria, the work supported by the Forum at country and regional levels needed to be coordinated. Members noted that many diseases listed under the global disease burden were in fact diseases of poverty. The discussion referred to poverty itself as being a persistent health problem, which was proving quite resistant to disease-based control programmes. The misconception prevailed that poverty arose out of the problems of the poor. Poverty is a structural problem. There are structural impediments that keep the poor poorer. The Committee advised that the health research community should revisit this complex issue. Members also noted that the research community should identify the determinants of health (as opposed to the determinants of disease). This is in itself a wide, necessary and multidisciplinary area of research. 2.7 Promoting the Use of WHO Collaborating Centres and other Networks in SEAR (Agenda Item 3.7) Dr U Than Sein, Director-EIP, WHO-SEARO, gave an overview of the situation regarding WHO Collaborating Centres (WHOCC) in the South-East Asia Region. He stated that there were a total of 84 centres in the Region, representing seven per cent of the total of 1,188 centres existing globally. Of the 84 centres in the Region, only 29 fell within the designation period. A total of 55 centres had completed their designation periods but needed intensive review for redesignation. A total of 17 national institutions or networks had applied for designation as new WHOCC. Majority of existing WHOCC (more than 50%) were from India, and about one-fourth from Thailand. Even though the centres were almost equally distributed according to major WHO programme areas of work, some WHO priority programmes, such as Tobacco, did not have any collaborating centres being designated. Till now, there were one or two centres each in the area of Malaria, CVD, diabetes, or HIV/AIDS. WHO South-East Asia Advisory Committee on Health Research Page 26 Ms Poonam Khetrapal Singh, Deputy Regional Director and Director, Programme Management, WHO-SEARO, highlighted the importance of enhancing collaboration between existing centres and WHO technical units at all levels. She also underlined the crucial role of WHO Representatives and their field staff, who are in direct contact at the country level for monitoring and evaluating the progress of collaborative work as well as for identifying potential centres for designation. There is also a need to have closer relationships between the WHOCC and national programme managers for which WHO might play a facilitating role. The Committee noted that there is an urgent need to enhance the capacity of the national institutions and networks which are responsible for programme activities that fall within the Organization-wide priority areas and to select and designate these centres as WHOCC. There is a need to increase awareness by the national health authorities as well as responsible WHO technical units for identifying appropriate national institutions or network which have the potential for technical excellence and which have been closely collaborating with WHO for some years. A concerted effort is also required to evaluate the work of existing centres in order to expedite the redesignation process. The Committee noted the review on WHOCC by the Regional Office and requested WHO to widely distribute the new information document on WHOCC issued by WHO-HQ. Members agreed that an increasing number of WHOCC was required for effective implementation of WHO programmes at all levels as well as for improving research and development activities in the respective areas. While efforts should be made to redesignate existing centres, there was an urgent need to select and designate new WHOCC, especially in areas such as genetics and genomics, ethics and health research, development of health research systems, and biotechnology. The SEA-ACHR members should assist in identifying appropriate centres from their respective countries. It was also suggested that designation could be done not just a centre, but also network or networks of centres for complex technical areas such as genomics or biotechnology. WHO should also streamline its designation process, including the enhanced role of WHO Representatives. The subject of promoting WHOCC in the Region was also suggested for discussion at the next meeting of The Report of the Twenty-sixth Session Page 27 Regional Director with its country representatives. Members felt that the WHOCC needed to work closely with other institutions within the same country or with those from other countries. They also needed to actively promote research and development activities, training, and information sharing. WHO and Member States should jointly carry out periodic review and evaluation of the work of the collaborating centres. SEA-ACHR should also review periodically the work of the WHOCC. Since networking was going to be an important instrument for capacity building and promoting research, WHO-SEARO and its development partners should facilitate the mobilization of appropriate resources for these networks to undertake effective research and development activities. Recommendations (1) Member Countries and WHO should identify appropriate national institutions and networks, which have been collaborating closely with WHO for health development, in order to designate new WHO collaborating centres (WHOCC). The revised WHO guidelines for WHO collaborating centres should be made available widely. Information on distribution of WHOCC by region and by different technical subject areas should also be widely accessible. (2) Periodic joint monitoring and systematic evaluation of collaborative activities between WHO and the centres have to be undertaken by responsible technical units of WHO, including the WHO Representative concerned. An annual meeting of WHOCC at national level, especially for countries with a sizable number of centres (such as India, Indonesia and Thailand) would help stakeholders to promote the effective use of these centres. (3) WHO-SEARO should strengthen the networks of WHOCC as important instruments for capacity building and promoting health research. WHO should work closely with development partners to facilitate the mobilization of appropriate resources for the network to undertake effective research and development activities. WHO South-East Asia Advisory Committee on Health Research Page 28 3 CLOSING SESSION Prior to commencing the closing session, the Chairperson of the 26th SEA- ACHR invited comments from the participants on the methods of work of the Committee, with a view to making future sessions more effective. Members appreciated the improved method of work that had already been adopted for the past several sessions, such as selection of special subjects for scientific debate, review of the progress of the work of the RPC programme at all levels, report on the progress of implementation of the global and regional ACHR recommendations, and sharing of information with the global health research programmes. Members also appreciated the concise background papers and the short presentations with ample time for discussion. In some cases, the group discussion and the panel debate provided an opportunity for eliciting ideas and developing final conclusions. Some SEA-ACHR members still felt that background papers should be prepared and shared in advance to enable them to study and bring ideas to the meeting. To this effect, they suggested that the topics for debate at the next session should be decided well in advance. It was also suggested that thematic subject(s) relevant to the Region as well as the host country should be chosen for a half-day session. It would also be appropriate to invite members of local scientific community to join the debate. This will ensure wider understanding of the subject as well as derivation of strategies and policies that might further influence health research development in the respective country. A number of topics were suggested for the next SEA-ACHR sessions, such as environment: ecology and health; health research and non- communicable diseases (CVD or stroke at young age); decentralization in health; expansion of health insurance; health research in arsenic poisoning; or any other topics of cutting-edge research issues addressing the unfinished agenda. The Committee requested the Regional Director to select the most appropriate topic for scientific debate, in consultation with Members. The Deputy Regional Director assured that their views would be considered seriously while formulating the provisional agenda for the next session, which would be provided to them in advance. The necessary background papers will also be prepared and circulated as early as possible. The Committee also noted the invitation of the SEA-ACHR members from Bangladesh to host the next session of SEA-ACHR in Dhaka. Chairperson then summarized the discussions, conclusions and recommendations of the Committee, based on the draft report as prepared by the Report-drafting Report of the Twenty-sixth Session Page 29 Group. Members carefully reviewed the draft report at plenary section-by- section and endorsed with minor modifications. Chairperson, in his closing remarks, reiterated that the inaugural and opening addresses by the Hon. Minister of Health and Education, Royal Government of Bhutan, and by the WHO Regional Director, had provided the strategic directions for health research development in the Region. He emphasized that the Region had rich resources in scientific and technical development, which could be utilized by appropriate networking. Chairperson underscored the role of SEA-ACHR in assisting WHO as well as Member Countries, in enhancing networking mechanisms and mobilizing the resources that would help in strengthening national health research systems. He expressed high appreciation for the valuable contributions to the Committee’s deliberations rendered by the Regional Director and the Deputy Regional Director. He thanked the Royal Government of Bhutan, for providing an “enabling environment” for the session, thus contributing effectively to the fruitful outcome of the meeting. Chairperson also thanked the local Organizing Committee as well as the WHO country office for the excellent arrangements, including field visits. Chairperson then commended the Report-drafting group and the Secretariat for the comprehensive documentation and technical support. Dr Sangay Thinley, Secretary, Health and Education, Royal Government of Bhutan and Co-chairperson of the 26th SEA-ACHR, thanked the Regional Director for organizing the meeting in Bhutan for the first time. He expressed appreciation to the Report-drafting group for their timely submission. He reiterated that the meeting clearly provided an impetus to the health research programme in Bhutan. Deputy Regional Director, Ms Poonam Singh, in her closing remarks, thanked the SEA-ACHR members and special invitees for their valuable inputs to the meeting. She congratulated Members and the Secretariat for concluding the session successfully. She also assured ACHR that the Regional Director would be apprised of the deliberations and concerns. Following appreciation expressed by Members, Chairperson closed the twenty-sixth session of the WHO South-East Asia Advisory Committee on Health Research. WHO South-East Asia Advisory Committee on Health Research Page 30 Annex 1 INAUGURAL ADDRESS BY DR UTON MUCHTAR RAFEI REGIONAL DIRECTOR, WHO SOUTH-EAST ASIA REGION I welcome you all to the twenty-sixth session of the WHO South East Asia Advisory Committee on Health Research (SEA-ACHR). It is a great honour to hold this session in the Kingdom of Bhutan. I sincerely thank the Royal Government for agreeing to host this meeting in this capital city of Thimphu. Indeed, it is the first time that the Advisory Committee on Health Research is meeting in this country, so rich in culture and tradition, which adds to the pleasure and privilege of addressing you. I extend a warm welcome to the distinguished members, both new and existing, as well as special invitees, dignitaries from the Royal Government, and our colleagues from WHO headquarters. Ladies and gentlemen, we are living in a world ever more interdependent. In order to respond more effectively to a rapidly evolving global environment, WHO developed a corporate strategy. The visions and values of Health for All inspire the corporate strategy. Its main message is to place health in a broader context. Knowledge and research are central to WHO’s corporate strategy. Setting the agenda for, and stimulating, research and development is indeed one of the core functions of the Organization. We need to manage information to assess health situations and trends. We need to improve our tools and our evidence to evaluate the performance of health systems. We need to focus our work so that tried and tested technologies actually reach the poor and vulnerable. We need to apply, and where necessary develop and improve, appropriate guidelines and technologies: for disease prevention and control, for more effective reduction of risks, and for more efficient health care management and service delivery. Research and development are essential to formulate healthy public policies and to underpin health sector reforms in countries. WHO Corporate Strategy is also a process of organizational development. It entails changes in the way we work, attempting to be broader based, more interactive and more focused. Accordingly, the role of the global Report of the Twenty-sixth Session Page 31 Advisory Committee on Health Research has been reviewed, including the relationship with its regional counterparts and other international health research bodies. The global ACHR is now operating with a much-improved balance of both disciplines and gender, providing strategic advice to WHO on a continuing basis. We, in this Region, have been actively involved in this process. At times, we have even been a step ahead. Last year, I reconstituted the WHO South-East Asia Advisory Committee on Health Research with fresh terms of reference and broader membership. The long-felt need, to bring together research policy-makers and research implementers in the Region, has been well reflected. Membership is now more representative of the countries in our Region. The Committee has a wider range of expertise than before, recognizing the complex nature of health research and the enormity of the challenges to public health we face in this Region. This was already been reflected in the Committee’s recommendations last year. These covered important areas such as health research management, regional priorities in HIV-AIDS research, regional vaccine research and development policy, operational research in reproductive health, and operational guidelines for ethical review committees. Much effort has been invested in following up these recommendations and putting the practicable into action. A full report is with you. I invite continuing attention by countries to these areas of long-term importance. Distinguished colleagues, the landmark Declaration for Health Development in the 21st century, adopted by the Honourable Health Ministers of this Region in 1997, was noteworthy as it provided guidance for future action. Subsequently, the Regional Conference on Public Health in the 21st century, held in Calcutta at the end of 1999, and the International Conference on Health Research, held in Bangkok in October 2000, added further strategic directions for health development in the Region. Let me try and summarize some of the important challenges we face, and how research and knowledge would clearly be necessary to address them. The first challenge is ensuring basic health services for all, especially the poor, women and vulnerable groups. The needy often do not get access. Health is one of the key factors in breaking debilitating cycles of poverty. Knowledge and new technologies have helped develop tools for addressing conditions of poverty. We need research into the means for tackling these conditions – new drugs and commodities, strategies for health promotion, disease prevention and control, efficient systems accessible to those in need. This is urgent. The second challenge is creating conditions which promote health and self- reliance. Research can help us understand health-seeking behaviour, as well WHO South-East Asia Advisory Committee on Health Research Page 32 as risk-reducing behaviour and lifestyles. It is important to understand popular perceptions if interventions are to be effective, especially in areas such as unsafe food or sexual behaviour, as well as problems related to alcohol or tobacco. The importance of health education and promotion is clear. These are important pre-conditions to empower people, especially women, to look after their own health. The third challenge concerns closing the gaps and inequities in health in our societies. An evaluation of the Health for All strategies clearly showed the increasing inequities within and between countries. We need to develop and sustain health systems, which improve health outcomes equitably and efficiently. Knowledge must help us develop and sustain health systems, which are responsive to legitimate needs as well as financially fair. The fourth challenge is to uphold and enforce health ethics, and to protect and preserve the dignity and worth of the human being, within and between countries. We need to strengthen ethics in health practices, in research as well as in our approach to public health. This is likely to be of vital importance in a rapidly globalized world in the 21st century. The fifth challenge remains placing health at the centre of development. Developing and sustaining healthy public policies is vital to provide an effective health dimension to social, economic, environmental and development policies. This requires health policy research to analyze what has happened, or what is happening, in different political, socioeconomic and cultural contexts. Effective decentralization is an important strategy in our Region, as it transforms vertical programmes into integrated programmes with bottom-up planning. Changes are also needed in leadership patterns and accountability, in feedback and training, in laws and regulations. Let us further consider the special problems of our Region which impact health. We are still faced with a formidable population problem. Illiteracy, especially female illiteracy, is still a major impediment to development in general and to health development in particular. Maternal mortality rates in some countries of our Region are among the highest in the world. Demographic, socioeconomic and epidemiological transitions have resulted in a double burden of communicable and noncommunicable diseases. Distinguished participants, I would urge you therefore to take a fresh look on how research and knowledge can best contribute to address the challenges we face. Let us try to do so in an integrated way. This is why we have placed an item to review and update ‘Regional health research strategies’ on the agenda of this session. Our existing strategies, which served us well, were developed in 1993. They require revision in the light of changes which have taken place since then and considering the challenges ahead. We Report of the Twenty-sixth Session Page 33 shall also review the criteria for health research activities supported by WHO, including those developed and proposed by this Committee in 1976, many of which are still valid. We have also included an item for scientific debate, on defining regional perspectives in human genetic research. This is in response to the Director- General’s recent request to the Global ACHR to study and report on the ethical, legal and social implications of human genome research. We are delighted to have present here eminent scientists on human genetics and biotechnology from the Region - as well as outside - to discuss this important topic. In order to successfully tackle the challenges facing the Region, priorities need to be set and exchange of experience encouraged, for instance, regarding utilization of research results, priority setting, strengthening ethical review, or the linkage between research and decision making. In this way, we can respond effectively to regional needs and keep with the global impetus. Sustained research efforts and good research management are required not only to address the unfinished agenda but also the challenges ahead. There is little doubt that we always seek new knowledge but let us not ignore existing knowledge. We have to ask ourselves why - all too often - proven, affordable and available technologies or approaches are still not applied to benefit peoples’ health? This question merits an urgent response. Mutually beneficial partnerships need to be forged between countries and regions. I would urge the members of this ACHR to maximize the potential of our partners. These include, among others, WHO collaborating centres, national centres of expertise, the Council on Health Research for Development, the Global Forum on Health Research, regional health research networks, various international health research foundations and trusts. We look forward to working with a broad range of partners to achieve common goals. We should learn from successes and failures. We should learn from successful research efforts and institutions and promote the application of appropriate tools and interventions. WHO is ready to facilitate and promote various networks for health and health research development, to help address the challenges ahead. Distinguished members of ACHR, I invite you to consider and recommend how best to do this in a practical way. In conclusion, I wish you success in your deliberations and look forward to the outcome of this important meeting. Thank you. WHO South-East Asia Advisory Committee on Health Research Page 34 Annex 2 LIST OF PARTICIPANTS Dr Harun-ar-Rashid Director Bangladesh Medical Research Council Mohakhali, Dhaka, Bangladesh Tel. 8828396 & 8811395 (O) Fax. 880-2-8828820 E-mail: bmrc@citechco.net Professor Shahjada Chowdhury Director National Institute of Preventive and Social Medicine Mohakhali, Dhaka, Bangladesh Telefax: 08802-8821236 E-mail: director@nipsom.agni.com Dr Sangay Thinley Secretary, Ministry of Health and Education Royal Government of Bhutan Thimphu, Bhutan Tel. 00975-2-326627 Fax: 00975-2-324649 E-mail: Sangay@Druknet.net.bt Dr Kim Myong Dok Director Department of Science and Technology Chollima Street, Central District, Pyongyang, DPR Korea Tel: 850-2-381-1811 Ex.8067 Fax: 850-2-381-4077 Professor N.K. Ganguly Director-General Indian Council of Medical Research New Delhi, India Tel. 6517204 (O) and 6493145 Res. E-mail: icmrhgdo@sanandnicin Dr Indrani Gupta Reader, Institute of Economic Growth Health Policy Research Centre University Enclave New Delhi-7 India Tel. 7257288/74247365 Fax: 7257410 E-mail: indrani@ieg.ernet.id Prof. Umar Fahmi Achmadi (Unable to attend),Director-General Communicable Diseases and Environmental Health Ministry of Health Jakarta Indonesia Tel. 62-21-4209930 E-mail: umar@indosat.net.id Dr Ramdan Panigoro PhD Director, Health Research Unit Padjadjaran University School of Medicine Hasan Sadikin Hospital Bandung,, West Java Indonesia Tel. 62-22-2038218 and 2030776 E-mail: ramdan@fk.unpad.ac.id Dr Agus Suwandono Secretary, National Institute of Health Research and Development Jakarta Indonesia Tel. 62-21-4243122 Fax: 62-21-4243933 E-mail: dragus@indosat.net.id Report of the Twenty-sixth Session Page 35 Dr Soeharsono Soemantri Senior Researcher National Institute for Health Research and Development Ministry of Health Jakarta Indonesia Tel. 62-021-42871604 Fax: 62-021-4244226 E-mail: harsono@litbang.depkes.go.i and ssoem@dprin.go.id Professor Eddy Pranowo Chairman, Department of Public Health and Preventive Medicine Medical Faculty, University of Airlangga, Surabaya Indonesia Tel. 62-031-5020251 (Ext. 134) Fax: 5027830 Dr Myint Lwin (Unable to attend) Director-General Department of Medical Research (Upper Myanmar) Mandalay, Myanmar Professor Paing Soe (Unable to attend) Director-General Department of Medical Research (Lower Myanmar) Yangon, Myanmar Tel: 095-01-284419 Fax: 251514 Prof. Mathura Prasad Shrestha Professor & Chair Resource Centre for Primary Health Care Bagbajar, P.O. Box 117 Kathmandu Nepal E-mail: mathura@healthnet.org.np Professor Gopal Prasad Acharya Chairman, Nepal Health Research Council Kathmandu, Nepal Tel: 977-1-254220 Res:977-1-424601; Fax: 977-1-262469 E-mail: gacharja@healthnet.org.np Dr K.C.S. Dalpatadu Deputy Director-General (Planning) Ministry of Health and Indigenous Medicine Colombo, Sri Lanka Tel: 94-1-692694; Fax: 94-1-679997 E-mail: ddgp@sri.lank.net Professor Dulitha N. Fernando Prof. of Community Medicine and Head Department of Community Medicine Faculty of Medicine, University of Colombo Colombo, Sri Lanka Tel: 695300, 696243; Fax: 691581 E-mail: cmcol@slt.lk; sunithf@sltnet.lk Dr Pakdee Pothisiri (Unable to attend) Director-General Department of Medical Sciences Ministry of Health, Bangkok Thailand Professor Porapan Punyaratabandhu Associate Professor Faculty of Public Health Mahidol University Bangkok Thailand Tel: 662-245-9673 Fax: 662-248-3299 E-mail: phppy@mucc.mahidol.ac.th Professor Chitr Sitthi-amorn College of Public Health Chulalongkorn University Bangkok, Thailand E-mail: chitr@cph.chula.ac.th Professor Chantapong Wasi Associate Professor Department of Microbiology Faculty of Medicine Siriraj Hospital, Mahidol University Bangkok, Thailand Tel: 662-4113111-4197068 Fax: 6624184148 and 4110263 E-mail: sicws@mahidol.ac.th WHO South-East Asia Advisory Committee on Health Research Page 36 Special Invitees Professor Robert Williamson Director, The Murdoch Institute, Royal Children's Hospital Flemington Road Parkville, VIC 3052 Australia. Fax : 61-3-9348-1391 E-mail: williamb@cryptic.rch.unimelb.edu.au" Prof. S.S. Aggarwal Prof and Head Genetics and Immunology Director, Sanjay Gandhi Post Graduate Institute of Medical Sciences Rai Baraily Road Lucknow-226003, India Tele : Off – 0522-440732 / 440112 Res - 322505; 371387 / Fax Res – 440973 E-mail: ssa@sgpgi.ac.in Dr U Soe Thein Deputy Director-General Department of Medical Research (Lower Myanmar), Myanmar E-mail: dmrlowerm@mptmail.net.mm Dr. Lalji Singh Director Centre for Cell and Molecular Biology Uppal Road Hyderabad 500 007, India Phone: 040 717 3487; Fax: 040-717 1252 E-mail: lalji@ccmb.ap.nic.in Professor Prawase Wasi Professor of Medicine Emeritus (Former Chairman, SEA-ACHR) Bangkok, Thailand Dr Astuti Soedarto Suparmanto Director-General National Institute for Health Research and Development (NIHRD) Ministry of Health Jakarta, Indonesia Tel: 62-21-4245214 and Fax: 4243933 Others Dr Kim Song Ha Interpreter Director, Department of Scientific Guidance Academy of Medical Sciences C/o NPO DPR Korea Observers Dr Dorji Wangchuk, Superintendent Jigme Dorji Wangchuk National Referra Hospital Royal Government of Bhutan Dr Ugen Dophu Deputy Superintendent Jigme Dorji Wangchuk National Referral Hospital Royal Government of Bhutan Dr Tenzin Penjor, Joint Director Public Health Division, Ministry of Health and Education Royal Government of Bhutan Mr Thinley Dorji Policy Planning Division Ministry of Health and Education Royal Government of Bhutan Mr Kado Zangpo Assistant Programme Officer Research Unit Health Department Royal Government of Bhutan Dr B.R. Giri Medical Specialists Jigme Dorji Wangchuk National Referral Hospital Mr Pemba Wangchuk Head Policy and Planning Division Ministry of Health and Education Royal Government of Bhutan Report of the Twenty-sixth Session Page 37 WHO Secretariat WHO/HQ Dr Tikki Pang Director, RPC E-mail: pangt@who.ch Dr Wang Yi-fei Area Manager for Asia and the Pacific Technical Support to Countries Department of Reproductive Health and Research. (RHR) E-mail: wangy@who.ch Regional Office Dr Uton Muchtar Rafei Regional Director Ms Poonam K. Singh Deputy Regional Director/Director Programme Management Dr Than Sein Director Evidence and Information for Policy E-mail-thansein@whosea.org Dr Adik Wibowo Regional Adviser, RPC E-mail: wibowoa@whosea.org Mr A.M. Meliala Scientist, RPC; E-mail: melialaa@whosea.org Dr Stephan P. Jost, Technical Officer Health Systems Research E-mail: josts@whosea.org Ms Rekha Anand Secretary, RPC E-mail: Anandr@whosea.org Country Office Dr Orapin Singhadej WHO Representative Dr Kunzang Jigmi National Medical Officer, Telemedicine Mr Norbhu Wangchuk National Professional Officer (Programme) Ms Rinji Om Senior Administrative Assistant (Programme) Mr Dorji Wangchuk Administrative Assistant Ms Dechen Choden Senior Secretary WHO South-East Asia Advisory Committee on Health Research Page 38 Annex 3 TERMS OF REFERENCE To advise the Regional Director in the following areas: � Formulation and implementation of health research policies and health research agenda in the Region in line with the resolutions and policy guidance of World Health Assembly, Executive Board and the Regional Committee, and also within the overall framework of the global WHO research policy. � Coordination and harmonization of health research activities of various national health research bodies/councils/departments, institutions with those of WHO, with the purpose of strengthening of national research capability and research management for health development � Development, management and improvement of health research information system, including research monitoring and evaluation, for evidence-based decision-making � Collection, analysis, and dissemination of existing health research findings on emerging scientific knowledge and technology, with a view to promote and foster research application and practices at the national and institutional level. (As adopted at the 25th session of SEA-ACHR, Bali, Indonesia, April 2000) Report of the Twenty-sixth Session Page 39 Annex 4 AGENDA 1. INAUGURAL SESSION 2. INTRODUCTORY SESSION 2.1 Introductory remarks by Dr Uton Muchtar Rafei, Regional Director, WHO South- East Asia Region 2.2 Introduction of participants 2.3 Nomination of Co-Chairperson 2.4 Opening remarks by Chairperson 2.5 Adoption of agenda and working schedule 3. BUSINESS SESSION 3.1 The Work of Regional Research Policy and Cooperation (RPC) Programme of the WHO South-East Asia Region, 2000-2001 3.2 Review of Regional Health Research Strategies 3.3 Regional Perspectives in Human Genetics 3.4 Review of Criteria for Health Research Activities Supported by WHO in the countries of the Region 3.5 Selected global health research activities: UNDP/UNFPA/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP) 3.6 Global and regional coordination in health research � Work of RPC/HQ and Global ACHR � Global Forum for Health Research 3.7 Promoting the use of WHO Collaborating Centres as well as other networks of research institutions and national centres of expertise in the countries of the Region 3.8 Adoption of Conclusions and Recommendations 4. CLOSING SESSION WHO South-East Asia Advisory Committee on Health Research Page 40 Annex 4 (contd.) Working Schedule Date Morning session(0830 – 1230 hrs) Afternoon session(1400 – 1700 hrs) 17 Apr 2001 (Tuesday) 1. Inaugural session 2. Introductory session 3. Business session 3.1 The Work of the Regional Research Policy and Cooperation (RPC) Programme of South-East Asia Region, 2000-2001 3.2 Review of Regional Health Research Strategies – Presentation of Draft prepared by the Expert Group – Group Work (Discussions on Draft) 18 Apr 2001 (Wednesday) 3.3 Regional Perspectives in Human Genetics (Scientific debate) Introduction by Director (EIP), followed by Panel Discussions (Prof. R. Williamson, Prof. S.S. Aggarwal, Dr Lalji Singh and Prof. Prawase Wasi) Moderator (Prof. Chantapong Wasi) 3.2 Review of Regional Health Research Strategies – Presentation of Group Works – Discussions and recommendations 19 Apr 2001 (Thursday) 3.4 Review of Criteria for Health Research activities supported by WHO in the Countries – Discussions and Recommendations 3.6 Global and Regional Coordination in Health Research – Work of RPC/HQ and Global ACHR 3.5 Selected Global Health Research Activities: – UNDP/ UNFPA/ WHO/ World Bank Special Programme of Research, Development and Research Training in Human Reproduction HRP) 3.6 Global and Regional Coordination in Health Research (contd.) - Global Forum for Health Research 3.7 Promoting the use of WHO Collaborating Centres as well as other networks of research institutions and national centres of expertise in the countries of the Region – Discussions and recommendations Note: Meeting of Report Drafting Group (1700 hrs) 20 Apr 2001 (Friday) Opening session (0900-1130) Discussions at market places 3.8 Adoption of Conclusions and Recommendations (1130 hrs) 4. Closing session (1230 hrs) Report of the Twenty-sixth Session Page 41 Annex 5 LIST OF WORKING DOCUMENTS Title Document No. Terms of Reference SEA/ACHR/26/1 Provisional Agenda SEA/ACHR/26/2 Proposed Working Schedule SEA/ACHR/26/3 List of participants SEA/ACHR/26/4 Review of the Work of Research Policy and Cooperation (RPC) Programme of the South-East Asia Region, 2000-2001 SEA/ACHR/26/5 (Agenda item 3.1) Review of Regional Health Research Strategies SEA/ACHR/26/6 (Agenda item 3.2) Regional Perspectives in Human Genetics SEA/ACHR/26/7 (Agenda item 3.3) Review of Criteria for Health Research Activities supported by WHO in the Countries of the Region SEA/ACHR/26/8 (Agenda item 3.4) UNDP/UNFPA/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP) SEA/ACHR/26/9 (Agenda item 3.5a) UNDP/World Bank/ WHO Special Programme for Research and Training in Tropical Diseases (TDR) SEA/ACHR/26/10 (Agenda item 3.5b) Global and Regional Coordination in Health Research SEA/ACHR/26/11 (Agenda item 3.6) Promoting the Use of WHO Collaborating Centres as well as other networks of research institutions and national centres of expertise in the countries of the Region SEA/ACHR/26/12 (Agenda item 3.7) WHO South-East Asia Advisory Committee on Health Research Page 42 Annex 6 LIST OF INFORMATION DOCUMENTS Related to Agenda item 3.1 – The work of Research Policy and Cooperation (RPC) Programme of South-East Asia Region, 2000-2001 1. Follow up of recommendations of 25th ACHR and Scientific Working Groups 1(a). Country Wise Address List of Members of Expert Advisory Panels from South-East Asia Region Related to Agenda item 3.2 – Review of Regional Health Research Strategy 2. Health Research for Development: the continuing challenge. A discussion paper prepared for the International Conference on Health Research for Development, Bangkok, 10-13 October 2000 3. Regional Consultative Process Asia 4. Annecy Meeting Report 5. Health Research Strategies of the South-East Asia Region, WHO-SEARO, 1993 Related to Agenda item 3.3 – Regional Perspective in Human Genetics 6. Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services, World Health Organization Human Genetics Programme 1998 7. The Human Genome Expanding the possibilities for health (Draft 2) January 2001 WHO Planning Group Discussion Document 8. World Health Organization Management of Noncommunicable Diseases – Workplan for the ethical, legal and social implications of genetics – a draft for discussion March 2001 9. ACHR Special Report on Genomics and Health, WHO – Geneva, 22 March 2001 Report of the Twenty-sixth Session Page 43 Related to Agenda item 3.4 – Review of Criteria for Health Research activities supported by WHO in the countries of the Region 10. Abstract from relevant portions of SEAR Handbook 11. Guidelines for filling up Research Application Forms 12. Guidelines for evaluation of research application for support Related to Agenda item 3.6 – Global and Regional coordination in health research 13. Report of the Global ACHR meeting, October 2000 Related to Agenda item 3.7 – Promoting the use of WHO Collaborating Centres as well as other networks of research institutions and national centres of expertise in the countries of the Region 14. WHO Collaborating Centres – General Information