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/

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!

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?

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”

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?)

From Q methodology to Q survey “Q2S”

• What are Q survey methods?

– Derived from the factor solution of an existing Q

– 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

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

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.

• 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

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

Q-to-Survey (Q2S) findings

Viewpoint Number of

respondents %

1 1808 37

2 2416 49

3 456 9

MIXED 231 5

Quantitative evidence of plurality

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

Thank you!

rachel.baker@gcu.ac.uk

Perspective, priorities and plurality

Presentations & Public Speaking