Integrating social science interventions in epidemic, pandemic and health emergency response Report of an informal consultation London, England 8 June 2017
WHO/WHE/IHM/2018.1
© World Health Organization 2018 Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial- ShareAlike 3.0 IGO licence (CC BY-NC- SA 3.0 IGO; https:/ /creativecommons.org/licenses/by-nc- sa/3.0/igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO endorses any specific organization, products or services. The use of the WHO logo is not permitted. If you adapt the work, then you must license your work under the same or equivalent Creative Commons licence. If you create a translation of this work, you should add the following disclaimer along with the suggested citation: “This translation was not created by the World Health Organization (WHO). WHO is not responsible for the content or accuracy of this translation. The original English edition shall be the binding and authentic edition”. Any mediation relating to disputes arising under the licence shall be conducted in accordance with the mediation rules of the World Intellectual Property Organization. Suggested citation. Report of the informal consultation "Integrating social science interventions in epidemic, pandemic and health emergencies response". Geneva: World Health Organization; 2018. Licence: CC BY-NC- SA 3.0 IGO. Cataloguing-in-Publication (CIP) data. CIP data are available at http:/ /apps.who.int/iris. Sales, rights and licensing. To purchase WHO publications, see http:/ /apps.who.int/bookorders. To submit requests for commercial use and queries on rights and licensing, see http:/ /www.who.int/about/licensing. Third-party materials. If you wish to reuse material from this work that is attributed to a third party, such as tables, figures or images, it is your responsibility to determine whether permission is needed for that reuse and to obtain permission from the copyright holder. The risk of claims resulting from infringement of any thirdparty- owned component in the work rests solely with the user. General disclaimers. The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of WHO concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted and dashed lines on maps represent approximate border lines for which there may not yet be full agreement. The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by WHO in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by WHO to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall WHO be liable for damages arising from its use. This publication contains the report of the informal consultation "Integrating social science interventions in epidemic, pandemic and health emergencies response" and does not necessarily represent the decisions or policies of WHO. Printed in Switzerland.
I
acknowledgements This consultation was jointly organized by the Wellcome Trust and the World Health Organization. It built on national and international discussions that have been ongoing since the 2014 Ebola outbreak in West Africa regarding challenges faced in community engagement and risk communication.
key contacts Dr Gaya Manori Gamhewage, MD World Health Organization gamhewageg@who.int Dr João Rangel de Almeida, PhD Wellcome Trust j.rangeldealmeida@wellcome.ac.uk
II
“people, not messages, bring change”
III
table of contents
1. Background 2. 3. 4. 5. Meeting objectives Setting the context for the Consultation Preface to the expert panels Expert panels
6. Discussion 7. Recommendations 8. Conclusion
Annex A: Annex B:
Agenda List of participants
IV
I. background The 21st century poses new and complex challenges in detecting and managing infectious hazards: SARS, pandemic influenza, and MERS-CoV are examples that can be added to more recent health emergencies such as Ebola or Zika. These outbreaks and epidemics have highlighted the need to systematically use social science-based approaches, methods, and analysis to understand the cultural and social contexts of communities affected by health emergencies as well as to detect behaviours and practices that increase the risk of death, disease or societal and economic loss. Social science approaches are also needed for transforming these risky practices into behaviours that protect people and communities from harm and stop the amplification of a disease or other threat. Social science methods, to be effective, are required to be developed in concert with affected populations to bring a disease outbreak or health emergency to an end. While social science approaches, such as the inclusion of medical anthropologists in disease outbreak investigation has been used in the past, the systematic inclusion of social science-based interventions (SSI) as an integral part of operational response remeins a challenge. WHO is currently working with partners such as the Wellcome Trust to develop a systematic approach to integrate social science-based interventions within health response operations and to build institutional and Member States’ buy-in and capacity. One entry point for such integration currently used by WHO is to build on the existing focus on capacity for risk communication within the International Health Regulations (IHR). The overall goal is to establish SSIs as a core public health response strategy that cross-cuts all infectious hazard management and the prevention and management of epidemics, pandemics as well as pandemics. By extension, it is anticipated that this work will also contribute to the management of any public health emergency. On 8 June 2017, WHO Health Emergencies Programme and the Wellcome Trust convened an Informal Consultation on Integrating Social Science Interventions in Epidemic, Pandemic and Health Emergency Response. The collaboration brought together 72 key stakeholders and experts from the research and emergency operational research arena. The meeting was part of a series of activities planned by WHO (see Fig:1 below) to initiate the systematic integration of SSIs in all disease outbreaks, epidemics and pandemics. The key goals are to stop epidemics fast and to minimize the avoidable loss of life, illness and societal and economic disruption.
consultations Informal consultations with stakeholders and lessons learned from Ebola, 20 events in 2016
draft concept Draft concept of high-level framework on SSI for epidemics, pandemics and health emergencies (WHO/Wellcome Trust)
global meeting Global meeting, London, 8-9 June 2017
SocialNet pre-deployment training, October 2017
training
Scope out WHO evidence based guideline on SSIs in epidemics and pandemics (Oct-Nov 2017)
Guideline
Figure 1: WHO start-up plan for integrating SSI into infectious hazard management
1
II. meeting objectives The overall objective of this Consultation was to identify ways to integrate SSI into emergency preparedness and response operations.
1 2 3
An agreed high-level framework for SSI for epidemics and global health emergencies, An agreed approach to the integration of SSI in operational response, including through galvanizing priority networks and institutions, and Identified priority research and funding gaps for activities as part of preparedness and operational response.
III. participants 72 experts from multi-disciplinary fields including anthropology, communication, public health, sociology, social and political sciences, social and behavioral change communications attended the Consultation, along with representatives from the donor community. Practitioners, researchers, policy makers and funders from the local, national, regional and international levels came from a variety of institutions including academic, government, nongovernment (NGOs), and the United Nations. The list of participants is attached in Annex B. A flash survey using electronic voting pads conducted at the beginning of the consultation revealed that 48% of meeting participants had between 6 and 20 years of experience working in emergencies. Nearly 2 out of 5 were engaged in work that focused on social sciences currently. Less than 1 on 5 said that SSI approaches were currently integrated in their work, while 38% said that SSI were not considered at all or only somewhat integrated. However, asked at the beginning of the consultation, 31% of participants said they were very confident that SSIs can be integrated into health emergency work, while 49% felt confident that some agencies would be able to achieve this. One in five said they were not confident that SSI can be integrated into health emergency work within the next 5 years. At outset of the meeting, 43% of participants said their main expectation was to see a commitment for integrating SSIs into health emergency response, while 25% wanted to learn about how this could be done. Others wanted to learn about SSI challenges in this area (15%), wanted to get funding (11%) and networking (3%). Asked how participants wanted to contribute to WHO’s efforts in this area, 44% wanted to help develop a research agenda, 23% wanted to be a “collaborator”, 16% wanted to be part of the proposed WHO Social Science experts’ Network (SocialNET) to deploy to the filed for emergency preparedness or response; 3% wanted to donate funds and 2 % wanted to be a trainer for WHO in this area.
2
40% 30% 20% 10% 0% Participants with 6-20 years of experience working in health emergencies Participants who were confident that SSI can be integrated into health emergencies work Participants who expect to see a comittment for integrating SSI into health emergencies work Participants who want to help develop a research agenda
40% 20%
of participants are currently engaged in work that focuses on social sciences.
of participants said that SSI approaches are currently integrated in their work.
38% of participants said that SSI is not considered at all or is only somewhat integrated in their work.
V. methodology Much of the meeting was conducted as a series of expert panel discussions, followed by plenary sessions. Group work was conducted to identify priority areas for action.
3
1. introduction
Speaker: Dr João Rangel de Almeida, Wellcome Trust Social scientists have been involved in health emergencies for a long time and share common goals: to prevent outbreaks from becoming epidemics, to end epidemics faster with less suffering and death. Social scientists have studied hospital emergency rooms, provided insights into legal and ethical implications of emergency response; mediated conflicts between communities, policy-makers, and delivery partners during epidemic-control programmes; and have delivered multiple research projects under the headings of epidemic preparedness and health emergency response. The potential of their contributions is today recognized as crucial to situating and adapting interventions that are sensitive to local cultures and help curtail the spread of disease. The purpose of the Consultation was not to raise the profile of social sciences but to think about the best approach to integrating social science into health emergency preparedness and response. The consultation will grapple with the question, how do we better integrate social science research in this work? One possible inroad is the WHO R&D Blueprint is a global strategy and preparedness plan, which allows the rapid activation of R&D activities during epidemics. The R&D Blueprint identifies a list of priority diseases that pose a public health risk because of their epidemic potential and for which there are no, or insufficient, countermeasures. The list includes: The questions before social scientists and the health emergency response community are: How can we develop a social science research agenda that contributes to better tackling these diseases? How do we link preparedness and response with research? Can social scientists pre-construct research protocols ready to be mobilised for health emergencies? Do standard operating procedures need to be adapted? Do we need a need a training programme that prepares social scientists to be deployed to the field? How will make sure that communities are engaged and empowered to protect themselves and actively stop infectious diseases from encroaching on humanity? A key challenge for funders of social science research and interventions is to determine how best to support integration of social science into policy and practice. Funders want to understand how their resources can ensure more and better collaboration among researchers and responders. How can knowledge from research findings be shared broadly across open sharing platforms? What collaborative networks exist and how can they be strengthened? What are the ways to better share data throughout a health crisis and emergency response? How do we build capacity to implement research at the community level, particularly in areas where health systems are weak?
4
2. Preface to the expert panels
Speaker: Dr Gaya Manori Gamhewage, WHO Communities are at the heart of any disease outbreak and health emergency response. WHO seeks to spur investment in social science research and harness its knowledge to yield interventions that motivate individuals and engage communities in reducing health risks, access health care, and participate in prevention and treatment actions to halt any infectious disease outbreak. SSI are a powerful set of tools that can encourage communities to detect and report outbreaks early and stop them from causing a cascade of preventable illness, suffering, and death. During the 2014-2015 Ebola crisis in West Africa, the initial response to the Ebola emergency focused on biomedical and epidemiological interventions to contain the outbreak. As the outbreak persisted and grew, the realization that biomedical and epidemiological responses were reliant upon community acceptance and adoption became more widely accepted by the international response. However, the work in this domain was often limited to awareness campaigns and social mobilization, and meaningful community engagement remained a challenge. Social science helped sensitize Ebola responders to the priorities and concerns of local people in affected communities and interact with them with respect for local customs and cultural norms, particularly around burial practices and dealing with the sick. In turn, communities became willing to temporarily change time-honored and sacred practices that had been dangerously instrumental in fueling the epidemic. As communities took control to change the behaviours and practices that exposed them to the Ebola virus, the epidemic subsided. The key objective of this meetings is to think through at how we can work better together. We are already a group of people forming the common ambition that social science needs to play a more predictable and central role in health emergency response. We have to be entrepreneurs and have the unrelenting belief that things can be done better.
5
3. Expert panels
Expert presentations are available at: www.who.int/risk-communication/social-science-workshop-london/en/ Most of the meeting was conducted in the form of expert panels followed by discussions. There were sessions on the following: The facilitator for the first panel was Dr Gaya Manori Gamhewage. It focussed on Health Emergencies and Social Science Interventions, Scope and Needs. Panellist spoke on SSIs and MERS-CoV (WHO), yellow fever 2016 in Africa (UNICEF), Integrating social science interventions in epidemic, pandemic and health emergency response (Anthrologica); Improving Public Health Emergency Response Programs through Social and Behavior Change Communication (Johns Hopkins University Health Communications Collaborative); Addressing Vaccine Hesitancy (WHO). The panel was followed by a presentation of UNICEF on Social Science to Guide Risk Communication & Community Engagement in Humanitarian Situations: UNICEF C4D Actions. WHO took the floor to present the WHO framework for social science interventions in epidemics and pandemics focused on the use of existing international frameworks as a means of integrating SSI into emergency response, most notably the International Health regulations (IHR).
common goals of social scientists
to prevent outbreaks from becoming epidemics
to end epidemics faster
to minimize suffering and deaths
6
The presentation of the framework was followed by a discussion. During the session Understanding and engaging communities and issues of health emergency response three different phases have been analyzed: Response – facilitated by Dr Gaya Manori Gamhewage. Key topics discussed were: Community Engagement; Best practice for health emergencies: Sarvodaya Experience in Sri Lanka (Sarvodaya Shramadana Movement Sri Lanka); Liberia’s response to Ebola( National Public Health Institute of Liberia); National Public Health Institute of Liberia (Dr Mosoka P. Fallah); and Understanding risk communication for health emergency response (WHO). Preparedness – facilitated by Cathy Roth Key topics discussed were: Preparedness for
Health Emergencies - Community, Context, Capacity (IDS), Improved preparedness with One Health (Afrique One Aspire), Strengthening community members’ capacity for emergency health preparedness: Who should be involved? (The Ethox Centre, University of Oxford) Integration – facilitated by Rafael Obregon Key topics discussed were: Community Engagement Health Promotion and Humanitarian Aid (MSF Spain); the interface between the humanitarian community and the outbreak community (Health in Humanitarian Crises Centre); Community engagement and the health system (WHO); Lessons learned from the HIV response (University of New South Wales). The meeting concluded with group work to identify the top funding priorities in the effort to integrate SSis into emergency work.
The participants’ discussion highlighted the following: Cultures in locations prone to infectious disease outbreaks with catastrophic potential have to be understood for their own uniqueness. Social science leads to an appreciation of what unifies a culture and explains the “why” and “how” of its norms and actions (about health and disease). Social and power dynamics are always at play in communities. Responders need to understand and engage appropriately.
Most experts noted that social science approaches go beyond emergency risk communication while a minority thought that it fit within its broad scope. Experts debated where to best integrate social acience research in the emergency structure. It was proposed that clear structure and channels are required,
The need to create standardised mechanisms to share data and knowledge across epidemic response actors. A common language that all actors in a response can understand and act on when appropriate is needed. National and local capacity must be supported to build social science knowledge and integrate social science interventions in preparedness, response, and recovery.
Social science approaches should be used to involve communities from the outset of an emergency response to understand their experience, views, and concerns before any action. Communities must own the response. Effective community engagement should be occurring and made stronger at all times and not just during emergencies. A need for an agreement on a standard definition of social sciences as related to health and humanitarian crisis. The term needs to be unpacked: social sciences and social science interventions are often used interchangeably, yet some experts argue that they are different concepts that require different resources and frameworks.
It’s important to train clinicians and community health workers and other technical experts in social science approaches and include their perspective in shaping social science interventions. Capacity and mechanisms need to be built not only for co-training but also for codeployment of social scientists in any emergency response.
7
vii. recommendations The following recommendations emerged from the discussions and the group work:
1. designate priority areas of research focus Prioritize studies in social sciences linked to the high-risk diseases prioritized in the WHO R&D Blueprint. Conduct research in countries at high risk of outbreaks as defined by WHO.
4. develop tools and definitions to integrate social science knowledge and interventions into public emergency preparedness, response, and recovery Develop WHO SSI guidelines. Develop standardized tools and survey questions to be asked across cultures and contexts related to high-risk disease threats. Develop a glossary of definitions ( a “common language”) for social sciences in the context of health emergencies, which translate across disciplines.
Invest in North-South collaboration and transfer of expertise for research.
2. Develop the evidence base for SSI Build upon the existing body of health and risk communication evidence to be applied to health emergencies. Develop agreed upon standards and methods for data collection.
Develop tools and models to apply cultural, historical and political knowledge to health emergencies.
Fund comparative studies, and conduct systematic reviews and case studies of: SSI from the 2014-2015 Ebola crisis in West Africa. The use and impact of local knowledge in the context of Ebola. Lessons from other disease outbreaks from the past 2-3 years - yellow fever, cholera, Zika, etc.
5. create platforms for funding, implementation and replication of proven efforts Support for long-term social science research which feeds directly into a platform, capable of assisting a rapid response.
Develop biosocial emergency response.
SSI that have been used in other fields (e.g., cancer, tobacco). Encourage practitioners to publish their experience to build up literature that could contribute to the evidence-base.
Exisiting
6. practice and use Measure effectiveness of interventions. Evaluate best practice and capture lessons learnt.
3. community resilience strengthening Fund research on strengthening civic participation at community level before, during and after disease outbreaks, epidemics, and pandemics.
7. create a new discipline that makes ssi a key part of public health preparedness, response, and recovery Create a new discipline that makes SSI a key part of public health preparedness, response, and recovery.
8
Build case studies/protocols to formalize the process of integrating social science in the preparedness and response in order to develop knowledge, translation and training. Develop a certified programme for “humanitarian sociology/anthropology” within universities organizations similar to the field epidemiology - an area of expertise that was built up over the last decade and is now part of emergency response.
conclusion These recommendations, which were made directly and emerged as the priorities across the different panels, will feed into the development of WHO’s strategy for integrating SSI into emergency work and will feature in funding proposals by the Wellcome Trust and WHO.
Build a pool of experts who can be deployed in emergencies.
Build a research agenda for SSI.
8. Capacity strengthening Strengthen collaborations with universities in countries most prone to outbreaks, epidemics, and pandemics and facilitate strengthening of the global South for SSI in emergency work. Involve social scientists in strengthening regional, national and local preparedness, response and recovery plans for health crisis scenarios, including their participation in the design and execution of preparedness exercises. Feature principles of effective community engagement in all training programmes for international, regional, national and local responders, including just-in-time training. Train clinicians and epidemiologists in the fundamentals and relevance of social science research. Train, prepare and support social scientists at the international, regional, national and local levels to mobilize and deploy to countries facing a health crisis. Integrate SSI in preparedness exercises, such as drills.
Create an international working group.
9. Governance Government accountability for integrating SSIs into response. Coordination among multiple sectors and actors.
9
agenda thursday, 8 june 2017 8:40 Registration, tea and coffee Introduction to the workshop and participants Katherine Litter, Wellcome Joao Rangel de Almeida, Wellcome Gaya Manori Gamhewage, WHO Health emergencies and social science interventions: scope and needs Chair: Dr Gaya Manori Gamhewage, WHO Speakers: Maria van Kerkhove, WHO Rafael Obregon, UNICEF Juliet Bedford, Anthrologica Amrita Gill Bailey, JHU Rob Butler, WHO UNICEF’S approach to social science interventions Chair: Gaya Manori Gamhewage, WHO Speaker: Ketan Chitnis, UNICEF Break Presentation and discussion of draft WHO framework for social science interventions in epidemics and pandemics Chair: Joao Rengel de Almeida, Wellcome Speaker: Gaya Manori Gamhewage, WHO Lunch Perspectives and discussion: Understanding and engaging communities and issues of health emergency response Chair: Gaya Manori Gamhewage, WHO Response Speakers: Vinya Ariyaratne, Sarvodaya Shramadana Movement Mosoka Fallah, National Public Health Institute of Liberia Aphaluck Bhatiasevi, WHO Discussion Preparedness Chair: Cathy Roth, DFID 14:20 Speakers: Melissa Leach, IDS Kathrin Heitz-Topka, Afrique One Aspire Patricia Kingori, the Ethox Centre, University of Oxford
9:00
session 1
10:00
10:45 11:00
session 2 11:30
12:30
session 3
13:30
10
agenda (continued) thursday, 8 june 2017 15:10 Break Integration Chair: Rafael Obregon, UNICEF 15:40 Speakers: Fernanda Falero, MSF Karl Blanchet, LSHTM Asiya Odugleh-Kolev, WHO Niamh Stephenson, UNSW Conclusions and recommendations to funders Chair: Katherine Litter, Wellcome Closing remarks Gaya Manori Gamhewage, WHO
16:10 16:30
11
list of participants name Abraham, Thomas Abramowitz, Sharon Ariyaratne, Vinya S. Aspinall, Lois Ayala Iacucci, Anahi Bah, Khadija Alia Beaumont, Naomi Bedford, Juliet Bedson, Jamie Bhatiasevi, Aphaluck Blanchet, Karl Butler, Robb Casey-Maslen, Marian Chitnis, Ketan Cinnamon, Jonathan Colegate, Charli Diniz, Debora Enria, Luisa Falero, Fernanda Fallah, Mosoka Farag, Elmoubashar Freeman, Luke Fried, Sandra Frigo, Mara Gamhewage, Gaya Gellin, Bruce Gill-Bailey, Amrita Golding, Josie Good, David Gulbenkian, Sergio Heitz-Topka, Kathrin Heymann, David Hilmi, Lisa Hoffman, Steven Honey, Michelle Karunajeewa, Samantha
company The University of Hong Kong Rutgers University Sarvodaya Shramadana Movement BBC Media Action Internews University of Saint Andrews ESRC Anthrologica Consultant World Health Organization Health in Humanitarian Crises Centre at LSHTM World Health Organization CDAC Network UNICEF University of Exeter Wellcome Trust Anis - Institute of Bioethics University of Bath Médecins sans Frontières National Public Health Institute of Liberia Ministry of Public Health of Qatar Anthroscape Ltd The Bill & Melinda Gates Foundation World Health Organization World Health Organization Sabin Vaccine Institute Johns Hopkins Center for Communication Programs Wellcome Trust University of Cambridge Calouste Gulbenkian Foundation Centre Suisse de Recherches Scientifiques Chatham House/LSHTM CORE Group CIHR Institute of Population and Public Health Wellcome Trust Independent Service Provider
12
name Kennedy, Stephen Kingori, Patricia Kinsey, Anna Kuper, Hannah Kwansa, Ben Leach, Melissa Lees, Shelley Lin, Leesa Littler, Katherine MacGregor, Hayley Mathewson, Sophie Matta, Gustavo Mobula, Linda Mohamed Nour, Mohamed Nakao, Jolene Niederberger, Eva Norton, Alice Obregon, Rafael Odugleh-Kolev, Asiya Ismail A. Palmer, Jennifer Parker, Melissa Parrish-Sprowl, John Pufall, Erica Rangel de Almeida, João Rosales, Alfonso Sarkar, Sushmita Savoia, Elena Smout, Elizabeth Stephenson, Niamh Stucke, Oliver Suri, Sameera Tsikata, Dzodzi Tufet, Marta Turner, Mike Van Kerkhove, Maria Vargha, Dora Wardwell, Sheldon Warner, Jo Ellen Weller, Charlie Wilkinson, Annie Wilkinson, Sophia Zoubiane, Ghada
company Incident Management System The Ethox Centre, University of Oxford Medical Research Council London School of Hygiene & Tropical Medicine University of Ghana Institute of Development Studies London School of Hygiene and Tropical Medicine Harvard University Wellcome Trust Institute of Development Studies Wellcome Trust Oswaldo Cruz Foundation United States Agency for International Development Ministry of Public Health of Qatar US Agency for International Development, Office of US Foreign Disaster Assistance Oxfam Wellcome Trust UNICEF World Health Organization London School of Hygiene & Tropical Medicine London School of Hygiene & Tropical Medicine Indiana University Wellcome Trust Wellcome Trust World Vision US Wellcome Trust Harvard T.H. Chan School of Public Health London School of Hygiene & Tropical Medicine University of New South Wales World Health Organization World Health Organization, global outbreak alert and response network (GOARN) University of Ghana Department of Health Wellcome Trust World Health Organization University of Exeter inWhatLanguage SoGoodMedia Wellcome Trust Institute of Development Studies BBC Media Action Medical Research Council
13
communities are at heart of any disease outbreak and health emergency response
14
Dr Gaya Manori Gamhewage, MD World Health Organization gamhewageg@who.int
Dr João Rangel de Almeida, PhD Wellcome Trust j.rangeldealmeide@wellcome.ac.uk
WHO/WHE/IHM/2018.1