Patient empowerment driving sustainable cancer care

Sustainable systems Eurohealth — Vol.24 | No.3 | 2018 18 PATIENT EMPOWERMENT DRIVING SUSTAINABLE CANCER CARE By: Kathy Oliver, Stefan Gijssels, Shannon Boldon and Suzanne Wait, onbehalfoftheAll.Caninternationalinitiative* Summary: Recent figures estimate that up to 20% of health care spending is wasted on inefficient interventions and care, and that up to two years of life expectancy could be gained if health care systems eliminated existing inefficiencies. The All.Can initiative was set up to improve the efficiency of cancer care, seeing this as a key step in achieving its sustainability. This requires a shift to policies that are genuinely patient-led. All.Can believes that we need to make bold policy choices, really listen to insights from patients, and use these insights to guide planning, evaluation and delivery of care. Keywords: Cancer Policy, Efficiency, Patient Empowerment, Sustainability Kathy Oliver is Founding Co- Director of the International Brain Tumour Alliance, Tadworth, UK; Stefan Gijssels is Executive Director at EuropaColon, Brussels, Belgium; Shannon Boldon is Senior Researcher and Suzanne Wait is Managing Director at The Health Policy Partnership, London, UK. Email: suzanne@hpolicy.com * All.Can is an international, multi-sectoral initiative aiming to improve the efficiency of cancer care by focusing on patient outcomes. All.Can comprises leading representatives from patient organisations, policymakers, health care professionals, research and industry. It is made possible with financial support from Bristol-Myers Squibb (main sponsor), Amgen, MSD and Johnson & Johnson (sponsors), and Varian (contributor), with non-financial (in-kind) contributions from IntaCare and GoingsOn. For a full list of All.Can members, see: www.all-can.org Patients at the centre of health systems Patient empowerment has been central to health policy reforms in the past several years. Through greater health literacy, shared decision-making and person-centred care, this empowerment has become intrinsic to many health care system goals. In addition, there are numerous ongoing efforts to genuinely involve people living with health issues and with real experiences of care in defining research priorities, designing clinical trials, developing models of care, and evaluating the potential value of new treatment approaches. Several important EU policies recognise that patients should be at the centre of health care systems, and that patient organisations should be a core part of health care policy and decision-making. Patient empowerment is increasingly recognised for being a key enabler of high-quality and sustainable health care systems. 1 2 3 When patients are involved in health care decisions and their preferences are listened to and acted on, the result is better health outcomes, more engaged patients and, potentially, lower health care costs. 1 The theme of this year’s European Health Forum Gastein is ‘Bolder political choices to achieve the Sustainable Development Goals (SDGs)’. The SDGs were developed by the United Nations Development Program to mobilise global collaboration and partnerships around priorities for shifting our world onto a sustainable and resilient path. 4 Drawing from the work of All.Can, a multi-sectoral initiative aimed at improving the efficiency of cancer care, this article looks at the potential role that patient empowerment can play in helping achieve more efficient and sustainable health care systems – in line with the SDG goal to “ensure healthy lives and promote well-being for all at all ages”. > #EHFG2018 – Forum 5: Patient insights for sustainable care Sustainable systems Eurohealth — Vol.24 | No.3 | 2018 19 Sustainability of health care systems: what is at risk? Over the last decade, there has been considerable concern for the sustainability of health care systems. Budgetary pressures have arisen due to the ageing population, the escalating cost of new treatments and technology, and increasing disparities in access to all aspects of care. These issues have focused the attention of patient groups, health care providers, economists and policymakers on ways to protect sustainability and ensure future generations may benefit from the best care available within the boundaries of health system affordability. The focus of concern should not only be on sustainability, but also on efficiency in health care systems. Recent figures estimate that up to 20% of health care spending is wasted on ineffective interventions, 5 6 and that two years of life expectancy could be gained by removing existing inefficiencies in health care systems. 7 Looking specifically at cancer care, inefficiencies abound. For example, one in three cancer patients does not receive pain medication appropriate to their pain level. 8 Poor adherence to medicines costs €125 billion per year in Europe. 9 Over €7.2 billion could be saved in Germany every year through better coordination of care leading to reduced hospital admissions. 10 A 2015 UK report found that providing appropriate follow-up care for cancer patients through personalised care planning (as opposed to emergency hospital admissions) may result in savings of £420 million (€470 million) per year. 11 Each of these inefficiencies represents a missed opportunity: better care for patients and their families, better outcomes for the health care system, and better (and more sustainable) use of health care resources. For example, in Europe if all colorectal cancers were diagnosed in stage I, more than €4 billion could be saved annually, and overall survival would increase to 90% rather than 8%, resulting in an additional 230,000 lives saved every year. 12 The key questions thus become: where do these inefficiencies in health care systems exist? And what mechanisms do we need to eliminate them and replace them with efficient practices instead? ‘‘patientsshouldbeatthecentreofhealthcaresystemsImproving the efficiency of cancer care Finding solutions to drive sustainable cancer care through greater efficiency is the core mission of All.Can, which was established to explore waste and inefficiencies in cancer care, and where policy efforts should be focused to yield the most meaningful benefits for patients. All.Can’s members – a network of leading patient advocates, health professionals, researchers, industry representatives, data experts and policymakers – are committed to working together to improve cancer care. Central to All.Can’s mission is its definition of inefficiency: any aspect of cancer care that is not focused on what matters to patients. The patient perspective is, unfortunately, rarely central to the way we plan, deliver or evaluate cancer care. 13 Processes drive outcomes, rather than the other way around. All.Can calls on policymakers – and the entire cancer community – to measure what matters to patients and use these data to drive a continuous cycle of improvement, embedding efficiency across the entire cancer care pathway. Redefining efficiency in cancer care from the patient’s perspective Every effort to improve efficiency must start with a clear understanding of what matters most to patients – and, equally, what may be considered wasteful or ineffective from the patient’s viewpoint. Patients have a unique perspective of living with a medical condition, experiencing care, and being in frequent contact with health care systems. Patients truly see the big picture, and can identify unnecessary or wasteful services and best practices. Ultimately, they can significantly contribute to more effective and efficient health care systems. All.Can’s research found that clear definitions of waste and inefficiency from the patient perspective are lacking in the available literature, and ongoing initiatives that focus on reducing waste and improving efficiency are rarely rooted in patients’ insights. Thus, the scope for patient empowerment in driving efficiency remains largely untapped. ‘Every euro, pound or penny we spend on something that isn’t adding to improving patient outcomes is money that’s being wasted.’ Vivek Muthu, Member of All.Can To help fill this gap, All.Can is conducting an international survey of cancer patients and caregivers, asking them where they have encountered inefficiencies across all aspects of care, and where efforts are most needed to drive meaningful change in cancer care (see http://www.all-can. org/patientsurvey/). The findings will be used to build a conceptual framework of inefficiency – and, by extension, efficiency – that can be used to guide policy recommendations and proposed policy actions in this area. Preliminary findings from the survey indicate that even seemingly simple changes to the way we deliver care can make a huge difference to patients’ experiences. For example, the timing of appointments is significant. One survey participant in the UK said: ‘It was important to have appointments after 10 am, so I could get free travel on the train.’ Additionally, inconveniently- timed appointments often require that patients and family members need to miss work or get appropriate childcare, adding to the financial pressures which can result from a serious illness. Inefficiency in getting the right diagnosis and delays in getting to the right specialist were also frequently reported. Sustainable systems Eurohealth — Vol.24 | No.3 | 2018 20 The survey is collecting responses until 31 October 2018, with full findings expected in January 2019. Patient insights driving system change Outcomes-based models of care have been advocated by many. The key is to implement them, and at scale. We now collect massive amounts of data from patients – but it is important to ask ourselves if we are using it appropriately. There is a responsibility, in collecting this data, to ensure we are not collecting data for data’s sake, but to drive positive changes in care and policy that benefits all. A key challenge to implementing outcomes-based models is the low availability of reliable outcomes data. Patient-determined outcomes data are often not systematically recorded in clinical practice. It is more common to see measures of process or transactional outcomes, used to assess hospital performance. 13 14 One reason for the poor availability of these data is linked to the fact that our health care information systems were not designed to collect comprehensive cost and outcomes data across the entire care pathway. Isolated budgets, fragmented information systems and lack of uniform electronic patient records, among other hindering factors, often make comprehensive collection of these data challenging. 13 14 There are, however, some good examples of promising initiatives where patient data are used to drive greater efficiency and better care. One such example is found in the potential of web-based approaches to provide follow-up care for lung cancer patients. A clinical trial in the US, France and other European countries allowed lung cancer patients to self-report symptoms on a weekly basis. The application analysed these symptoms using an algorithm to determine which patients needed to be called in for imaging tests. This was compared to ‘usual care’, where patients were subject to tests according to a fixed schedule – tests that were sometimes harmful and unnecessary. There was a huge difference in survival shown early in the trial. Patients using this web application for follow-up care were found to have longer survival and better quality of life, as they only had to receive tests when deemed necessary. 15 The examples cited above show the potential for using patient insights to drive greater efficiency and better care for patients as a result. The question is how to implement these examples at scale. The theme for the Gastein forum mentions ‘bolder political choices’, and there is nothing bolder than committing to take patients’ and caregivers’ views on board – and to drive changes to address those views – across all aspects of care, from planning to delivery and evaluation. An interesting example of patient-led policy comes from the Dutch Ministry of Health. In 2013, it opened a ‘waste hotline’ to encourage citizens to report their experiences and ideas on waste in health care. 16 More than 16,000 responses were received. Based on this evidence, it established a series of policy initiatives to eliminate waste, including: a national action plan to prevent waste; pilot projects that aim to eliminate waste; and sharing of best practices on the Ministry of Health website. The Dutch initiative draws from actual health system users to define waste and propose concrete policy changes focused on these findings. All.Can wishes to emulate this example in cancer care: using the findings from its patient survey to identify key areas on which to focus, thus driving meaningful change for cancer care. Patient-led policy change: is it achievable? ‘The goal is to change the clinical paradigm from “what’s the matter?” to “what matters to you?” ’ Susan Edgman-Levitan, Executive Director, John D Stoeckle Centre for Primary Care Innovation, Massachusetts General Hospital To achieve widespread patient-led health care policy requires commitment from all stakeholders – and most importantly, from patients. It requires a shift in attitudes and behaviours, and policy frameworks to facilitate system change. All.Can wants this method of policymaking to become common practice – by showing its potential to achieve positive results. Inefficiencies in cancer care, and health care more generally, are caused by a failure to focus on what matters to patients. Put differently, if one focuses care on what matters to patients, our health care systems would achieve better results and use resources more efficiently, thus becoming more sustainable and achieving the SDG goals. References 1 European Patients’ Forum (EPF). EPF Campaign on Patient Empowerment: Roadmap for Action. 2017. Available at: http://www.eu-patient.eu/globalassets/ campaign-patient-empowerment/roadmap/ roadmap_patient-empowerment_-epf_2017.pdf 2 European Health Parliament. Patient empowerment and centredness, 2015. Available at: http://www.healthparliament.eu/wp-content/ uploads/2017/09/EHP-papers_Patients- empowerment.pdf 3 All Party Parliamentary Groups (APPG). Patient empowerment: for better quality, more sustainable health services globally. London, 2014. 4 United Nations (UN). Sustainable Development Goals, 2018. Available at: https:// sustainabledevelopment.un.org/?menu=1300 5 World Health Organization. Health systems financing: the path to universal coverage. The World Health Report. Geneva: WHO, 2010. Available at: http://www.who.int/whr/2010/en/ 6 Organisation for Economic Cooperation and Development (OECD). Tackling Wasteful Spending on Health (Revised). Paris: OECD Publishing, 2017. 7 Medeiros J, Schwierz C. Efficiency estimates of health care systems in the EU. European Economy: European Commission Directorate-General for Economic and Financial Affairs. Economic Papers 549, 2015. Available at: http://ec.europa.eu/economy_ finance/publications/economic_paper/2015/pdf/ ecp549_en.pdf 8 Cancer World. Pain! The Denial needs to end, 2017. Available at: http://cancerworld.net/cover- story/pain-the-denial-needs-to-end/ 9 EFPIA. Patient Adherence – 50% of patients don’t take their medicine properly, 2012. Available at: http://www.efpia.eu/topics/people-health/patient- adherence 10 Sundmacher L, et al. Krankenhausaufenthalte infolge ambulant-sensitiver Diagnosen in Deutschland. [Hospital stays due to outpatient-sensitive diagnoses in Germany] In Munich L (Ed) Krankenhausreport 2015;149 – 60. Sustainable systems Eurohealth — Vol.24 | No.3 | 2018 21 11 Macmillan Cancer Support. Cancer cash crisis: counting the cost of care beyond treatment, 2015. Available at: https://www.macmillan.org.uk/ documents/campaigns/cancercashcrisisreport- macmillandecember2015.pdf 12 EuropaColon. Unpublished data. 2018. 13 All.Can Initiative. Towards sustainable cancer care: reducing inefficiencies, improving outcomes. A policy report from the All.Can initiative. Journal of Cancer Policy 2017;13:47 – 64. Available at: https:// doi.org/10.1016/j.jcpo.2017.05.004 14 Porter ME, Larsson S, Lee TH. Standardising Patient Outcomes Measurement. New England Journal of Medicine 2016;374(6):504–06. 15 American Society of Clinical Oncology. Mobile- Friendly Web Application Extends Lung Cancer Survival, 2016. Available at: https://www.asco.org/ about-asco/press-center/news-releases/mobile- friendly-web-application-extends-lung-cancer- survival 16 Lafeber F, Jeurissen P. Reducing waste in health and social care in The Netherlands; Eurohealth 2013; 19(4):34 – 37. THECAPITAL- NCD-NEXUS: THE COMMERCIAL DETERMINANTS OF HEALTHANDGLOBAL CAPITALFLOWS By: Christian Franz and Ilona Kickbusch Summary: In the past, the role of global capital flows for health has not been considered in the debate about key risk factors of Noncommunicable Diseases (NCDs). This is a blind spot in public health. A significant share of the global food and beverage industry is owned by institutional investors. Cross-border mergers and acquisition volumes in the food, beverage, and tobacco industries have substantially increased. Progress on preventing and controlling NCDs requires the public health community to engage in a forward-looking discussion to address investors’ responsibility in relation to global health in general and the tsunami of NCDs in particular. Keywords: NCDs, Public Health, Global Capital Flows, Commercial Determinants of Health, Obesity, Institutional Investors Christian Franz is Managing Director of CPC Analytics, Berlin, Germany; Ilona Kickbusch is Director of the Global Health Programme at the Graduate Institute in Geneva, Switzerland. Email: c.franz@cpc-analytics.com Introduction “[…] how can food and soft drink makers market and sell their products to the masses of children around the world, seeing them more as opportunities for profit, and turning a blind eye to the spiralling rates of childhood obesity and early onset diabetes?” 1 When World Health Organization (WHO) Director- General Tedros Adhanom Ghebreyesus asked this question in his opening remarks at the Global Conference on NCDs in Montevideo 2017, his words must have resonated with most attending Ministers of Health. Globally, the number of obese children and youths was estimated to have reached more than 107 million in 2015 – 30 million more than 15 years earlier and a 1.1 percentage point increase in prevalence. 2 Out of 51 countries in the WHO European Region, in 42 countries, obesity among children and youth has increased (see Figure 1). In absolute numbers these developments appear even more dramatic: > #EHFG2018 – Closing Plenary: Commercial determinants of health & global financial markets