perspective, priorities and plurality
TRANSCRIPT
Rachel Baker
Professor of Health Economics
Yunus Centre for Social Business & Health
Perspectives, priorities and plurality:
Eliciting societal values and the relative value of life-
extension at the end of life
London Health Economics Group
OHE 17th November
Images by http://www.joelcooper.co.uk/
Images by http://www.joelcooper.co.uk/
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, (GCU) Marissa Collins, Rohan Deogaonkar 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
TERMS value values viewpoints
preferences principles perspectives
METHODS
willingness to pay Q methodology depth interviews
choice exercises Q-to-survey methods focus groups
person trade off… … citizens juries..
Societal values: terms and methods
Measureable
Quantitative
Aggregation
Narrative
Qualitative
Individual
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
MRC Methodology Panel funding 2011-2014 Rachel Baker, Helen Mason, Neil McHugh, Cam Donaldson, Laura Williamson, Jon Godwin, (GCU) Marissa Collins, Rohan Deogaonkar Job van Exel (Erasmus, Rotterdam) Cathy Hutchinson (Beatson Cancer Centre)
Objectives
i. 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;
ii. 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.
In other words
i. What do different people think about the value of life
extension for people with terminal illnesses?
ii. Can we find a way to measure how many think in
each way, and how strongly they agree?
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
Where did the statements
come from?
Statements taken from
– Media review (readers’ comments)
• 45 articles
– Public consultation – NICE EoL policy
• 850 comments from 300 respondents
– 16 depth-interviews
– 3 Focus groups (20)
Resulted in 49 statements
6. If somebody wants to keep fighting until the last possible moment, they should be allowed to do so, regardless of cost
3. Treatments should be directed towards people who have a greater chance of survival
18. It may not sound like much, but a few extra weeks or months might mean an awful lot to a family affected by a terminal illness
23. A year of life is of equal value for everyone
33. End-of-life drugs are not a cure, they are life-prolonging. There is no point in delaying the inevitable for a short time
Who sorted the statements?
59 “data rich” individuals
Health/policy professionals, patient groups, charities, hospices,
bereaved families, cancer research scientists, pharma industry,
health economists, ethicists, religious leaders...
…then 250 members of the general public across UK
FACTOR A
FACTOR B
FACTOR C
Three perspectives on the relative value of life
extension at the end of life
V3: “Valuing wider benefits and opportunity cost – the quality of life and death”
V1: “A population perspective – value for money, no special cases .”
V2: “Life is precious – valuing life-extension and patient choice”
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Phase 2
• Understanding societal views is one important aspect of
policy making..
• We might also ask:
– How common or strongly-supported are each of the
viewpoints in the general population?
– Is there a dominant or majority view?
– (What kind of people tend to hold which views?)
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From Q methodology to Q survey “Q2S”
• What are Q survey methods?
– Derived from the factor solution of an existing Q
study
– Select key aspects of factors and summarise
– Number of potential survey approaches e.g.
• small number of carefully selected statements
• short descriptions of factors
– Respondents indicate strength of agreement using
ranking or Likert scale methods
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Survey design
• Original Q study = 49 statements, 3 factors
• How can we best represent our 3 factors from a smaller
number of statements
• For each factor - selection of statements which are
salient and distinguishing
• 6 per factor = 18 statements from the original 49
• Rate each of the 18 statements on a 1 – 7 Likert Scale
30
Survey Design – Statements
• Factor 1
38. The health system should be about getting the greatest benefit
overall for the population.
5. At the end of their life, patients should be cared for at home with a
better quality of life rather than have aggressive and expensive
treatments that will only extend life for a short period of time.
26. It is wrong to raise hopes and expectations by making a special case
for treatments that will only extend life by a short time.
3. Treatments should be directed towards people who have a greater
chance of survival.
2. We should support an individual patient's choice for treatments that
give short life extensions
13. I would place more value on end-of-life treatments than many
medical treatments for non-terminal conditions.
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• Online survey conducted in the UK (May 2014)
• Quota sampled to be nationally representative of the UK
population based on:
– Age
– Gender
– Socioeconomic status
– Ethnicity
• N = 4911
Survey Administration
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Survey Administration
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Analysis
• Sum Likert scores for each block of 6 statements
– Total score out of 42 for each factor
– Rescaled between 0-10
• ‘Assign’ a respondent to a single factor
based on their maximum score
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Q-to-Survey (Q2S) findings
Viewpoint Number of
respondents %
1 1808 37
2 2416 49
3 456 9
MIXED 231 5
TOTAL
4911
100
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Quantitative evidence of plurality
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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)
High level PRINCIPLES Theory
Mid level POLICIES Operation
Low level PATIENTS Case
Multi-level study of social values and resource allocation in health care
