Perspectives, priorities and plurality

Perspectives, priorities and plurality What matters to people: priorities for individuals, communities and populations Priorities 2016 Rachel Baker Professor of Health Economics Yunus Centre for Social Business & Health

Some background

Using Q methodology to investigate societal viewpoints and the relative value of life extension for patients with terminal illness MRC Methodology Panel funding 2011-2014 Rachel Baker, Helen Mason, Neil McHugh, Cam Donaldson, Laura Williamson, Jon Godwin, Marissa Collins, Rohan Deogaonkar (GCU) Job van Exel (Erasmus, Rotterdam) Cathy Hutchinson (Beatson Cancer Centre)

Perspectives, Priorities and Plurality Societal values and priority setting And use of terms: values/viewpoints, preferences/perspectives End of life a case in point End of life policy and claims about societal values (2009) Research evidence (2010-2016) Plurality and societal values Evidence of plurality in preferences and perspectives Policy dilemmas and possible directions Future research agenda

Societal values: terms and methods TERMS value values viewpoints preferences principles perspectives Measureable Quantitative Aggregation Narrative Qualitative Individual METHODS willingness to pay Q methodology depth interviews choice exercises Q-to-survey methods focus groups person trade off citizens juries..

NICE End of life supplementary guidance 2009 Specific criteria less than 2 years to live treatments would result in a gain of at least 3 months of increased life expectancy drug is licensed for a relatively small patient group

Legitmacy and societal values The Institute recognises that the public, generally, places special value on treatments that prolong life even for a few months at the end of life, as long as that extension of life is of reasonable quality (at least pain-free if not disability-free). NICE has therefore provided its advisory bodies with supplementary advice about the circumstances under which they should consider advising, as cost-effective, treatments costing > 30,000 per QALY. Rawlins et al Brit j of Clinical Pharmacology 2010 p 348

Research evidence since 2009 is mixed!

Using Q methodology to investigate societal viewpoints and the relative value of life extension for patients with terminal illness

Using Q methodology to investigate societal viewpoints and the relative value of life extension for patients with terminal illness www.gcu.ac.uk/endoflife

Q Methodology

FACTOR A FACTOR B FACTOR C

Three perspectives on the relative value of life extension at the end of life V1: A population perspective value for money, no special cases. V2: Life is precious valuing life-extension and patient choice V3: Valuing wider benefits and opportunity cost the quality of life and death

Q-to-Survey (Q2S) findings Viewpoint Number of respondents % 1 1808 37 2 2416 49 3 456 9 MIXED 231 5 TOTAL 4911 100 23

Quantitative evidence of plurality 24

Dilemma incorporating (plural) societal values into policies and decisions? 1. Majoritarian approaches 2. Ethical analysis (and the role of societal values?) 3. Deliberative methods (and the role of societal values?) 4. Critical analysis of societal values - consistency and consensus in empirical data (principles, policies, patients)

Multi-level study of social values and resource allocation in health care High level PRINCIPLES Theory Mid level POLICIES Operation Low level PATIENTS Case

Thank you! rachel.baker@gcu.ac.uk