People living and dying with serious and complex illness are the most significant challenge facing 21st century health care. In the context of technological advances and demographic change, societies need to consider appropriate strategies and care for an unprecedented population of older people with multi-morbidity, functional limitations and dementia. In high-income countries, health systems originally designed to provide acute, episodic care struggle to meet the needs of these older populations with serious and life-limiting illness. The growing prevalence of serious and complex illnesses across high-, middle- and low-income countries emphasizes the need for reforms that support cost-effective strategies and community preferences for successful ageing.
While care for people with serious illness is widely recognised as a priority, economic research to inform policy and practice is relatively limited. Evidence on priority-setting, palliative population and community preferences, relative costs and effects, economic evaluation, the psychology of decision-making, and broader health system analysis such as the planning and funding of services across health and aged care settings is scarce. As well as the ethical and practical constraints associated with recruiting and retaining representative samples of seriously-ill people in research studies, economics research faces particular challenges.
Outcome measurement is a contested field with a lively ongoing debate on the usefulness of quality-adjusted life years in evaluating outcomes for seriously-ill people and their families. Costs are multi-faceted in care for serious illness. Treatment is complex, interdisciplinary and provided across community and institutional settings. Informal care is a critical component. Interventions may have spillover effects to other parts of the system, e.g. by reducing hospital admissions or institutional care, or impacting labour market participation among both patients and family members.
What is the Economics of Palliative & End-of-Life Care Special Interest Group?
The Economics of Palliative and End-of-Life Care Special Interest Group aims to bring together iHEA members to address both the priority policy questions and intriguing analytical challenges in this field. By encouraging members to identify and tackle issues in this area we hope to significantly improve the quality and quantity of economics research in palliative and end-of-life care undertaken globally, and in turn improve health care provision and outcomes for people with serious and complex medical illness.
Aim: To develop, stimulate, facilitate and promote scientific discussion and international, collaborative research into the economics of palliative and end-of-life care.
Economics of Palliative & End-of-Life Care SIG Objectives
- Build consensus on good research practices and develop methodological guidelines for conducting economic analyses in palliative and end-of-care in areas such as:
- Measuring costs;
- Measuring outcomes;
- Incorporating carer, family and wider community effects;
- Preferences at the end of life;
- Defining and measuring intensity and appropriateness of care at the end of life;
- Equity in end-of-life experience and access;
- Linking population-level data and ‘big’ data to inform research and policy in practice;
- Promoting whole-of-systems thinking with consideration of joint research, reimbursement and regulatory decisions and simulation modelling; and
- Statistical analysis, e.g. managing missing or censored data.
- Connect researchers interested in health economics and palliative and end-of-life care to exchange experience and facilitate collaboration on research projects and grant proposals through the iHEA website, SocialLink, blogs (e.g. geri-pal, CAPC, Health Affairs), webinars and a repository of SIG member publications.
- Share experiences and consider opportunities for applying evidence from economic studies in health policy and system reforms.
- Present an organized session at each biennial iHEA Congress to promote methodological and applied research in the area.
- Organize sessions at the biennial European Association of Palliative Care (EAPC) research congress and other major conferences, e.g. Academy Health.
- Discuss the current state of economics research in palliative and end-of-life care through a working paper, identify key knowledge gaps and set an initial proposed agenda for future research.
Joining the Economics of Palliative & End-of-Life Care SIG
Membership is open to iHEA members who are working and/or studying in the field.
Membership can be requested by logging in to the iHEA website, selecting the "groups" section and clicking "request to join" by the SIG name. Membership is approved by the convener(s) of the SIG.
Conveners: Dr. Nikki McCaffrey, Senior Research Fellow (Economics of Cancer), Deakin Health Economics, Deakin University; Dr. Peter May, Health Economist, Trinity College Dublin, Ireland.