1. Extending life for people with a terminal illness: a moral right or an expensive death? Empirical and methodological issues Rachel Baker, Helen Mason & Neil McHugh Glasgow Caledonian University Job van Exel Erasmus University Rotterdam

2. Overview of the session Introduction to the project –Background –Research objectives –Methods Three presentations Discussion

3. UK MRC Methodology Panel funding 2011-2014 “Is ‘end-of-life’ care more valuable? Measuring societal views on health care resource allocation using the new Q2S method.” Rachel Baker, Neil McHugh, Helen Mason, Cam Donaldson, Laura Williamson, Jon Godwin, (GCU) Marissa Collins, Rohan Deogaonkar Job van Exel (Erasmus, Rotterdam) Cathy Hutchinson (Beatson Cancer Centre, NHS Greater Glasgow &Clyde)

4. Starting point of the study Scarcity and health care resource allocation in publicly funded health systems. →Under limited budgets, decisions must be made about which treatments (not) to fund. Considerations of fairness and relative value of health gains benefiting different patient groups in different ways. →Are equal sized health gains ‘worth’ the same regardless of who benefits and in what ways?

6. NICE End of life Supplementary guidance 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 li censed for a relatively small patient group “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 (2010) Brit j of Clinical Pharmacology, p 348

7. Research Objectives 1.To identify and describe societal perspectives on the (relative) value of end of life technologies by eliciting the views of both members of the public and experts in relevant fields; 2.To develop methods to investigate the distribution of those views, including their association with other characteristics, in a nationally representative sample of the UK general public. Q methodology Survey methods Methodological, quantitative Empirical, qualitative 5,000 online questionnaire respondents 50 experts; 250 public; face to face Q sorts

8. A little bit about Q methodology What is Q methodology? A set of connected techniques designed to enable the study of ‘subjectivity’: views, opinions, beliefs, values, tastes, preferences… “Only subjective opinions are at issue in Q, and although they are typically unprovable, they can nonetheless be shown to have structure and form, and it is the task of Q technique to render this form manifest for purposes of observation and study.” Brown, 1986, p. 58

9. What goes in: –People’s rank ordering of statements of opinion –Their explanations of why What we do: –Look for patterns between those orderings –Interpret the patterns What comes out: –Rich descriptions of a small number of shared views –Distinguishing and consensus issues A little more bit about Q methodology

10. FACTOR A FACTOR B FACTOR C

11. A little more bit about Q methodology What goes in: –People’s rank ordering of statements of opinion –Their explanations of why What we do: –Look for patterns between those orderings –Interpret the patterns What comes out: –Rich descriptions of a small number of shared views –Distinguishing and consensus issues

12. A little bit about Q & survey New grounds –Develop and test five approaches –Today we focus on one approach

13. Three presentations Identifying societal perspectives on the relative value of life extending end of life technologies Rachel Baker Investigating the prevalence and distribution of views across the UK population Helen Mason Life-extending technologies for terminally ill patients: views v policy choices Neil McHugh