Public values, plurality and health care resource allocation: What should we do when people disagree? (..and should economists care about reasons as well as choices?) CHE Seminar 21 January 2019

1. Public values and priority setting. What
should we do when people disagree?
Exploring approaches to plurality
Incompletely Theorised Agreements: exposing
structures in public values
Rachel Baker
Professor of Health Economics
Director Yunus Centre for Social Business and Health
rachel.baker@gcu.ac.uk

2. Acknowledgements,
funding and co-investigators
GCU:
Cam Donaldson
Helen Mason
Neil McHugh
Job van Exel Erasmus, Rotterdam
Lucy Frith Liverpool
Ellen Stewart Edinburgh
Benedict Rumbold UCL

3. Outline
Incompletely Theorized Agreements (Sunstein 1995, Ruger 1998, 2012)
– A multi-level framework for examining structure in public values
Discussion:
– How do economists deal with heterogeneity?
– Is there value in exposing structures in public values?
– Opening black boxes or over engineering?
– Should economists care about reasons as well as preferences?
Where my questions come from:
Focus on:
– “public”, “values”, and “priority setting”
– evidence of plurality in preferences/ views on provision of expensive,
life-extending, end of life technologies
What to do when people disagree?
Part I
Part II

5. Part I
Terms, focus and where I’m coming from:
“Public” and “values” and “priority setting”

8. Public and Patient Involvement – PPI:
a wealth of terms
Who What In relation to How?
Public (s) involvement policy councils
Citizen participation priority setting panels
Community engagement decision making juries
Lay representation coverage deliberation
Societal values resource allocation interviews
Patient views HTA membership
User preferences governance surveys
consumer … management coproduction
service design …
patient choice
… …

9. Evidence of plurality in public
values
The relative value of expensive, life extending
treatments for people with terminal illnesses

10. 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

13. Legitimacy 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

15. “Overall finding: end-of-life vs non-end-of-life
- Consistent with an end-of-life premium 8 34.8%
- Not consistent with an end-of-life premium 11 47.8%
- Mixed or inconclusive evidence 4 17.4%

16. Within-study evidence of plurality

17. 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)

18. Valuing wider benefits and opportunity cost – the quality of
life and death
A population perspective – value for money, no special cases
Life is precious – valuing life-extension and patient choice
V1
V2
V3
Three viewpoints on the relative value of
life extension at the end of life
Neil McHugh et al 2015 BMC Medical Ethics

19. Measuring agreement - evidence of plurality
Viewpoint Number of
respondents
%
V1 1808 37
V2 2416 49
V3 456 9
MIXED 231 5
TOTAL 4911 100
Helen Mason et al 2017 Health Economics

20. 37
49
9 5 v1
v2
v3
mixed
What to do when people disagree?

21. 37
49
9 5 v1
v2
v3
mixed
What to do when people disagree?
+
Resolves disagreeement
through majoritarianism
(large numbers)
Respects preferences does
not judge
Produces determinate
outcomes (in principle!)
-
Does not require reasons,
no means to judge, how
well considered
No process for changing
views or challenging
methods
Black box

22. 37
49
9 5 v1
v2
v3
mixed
What to do when people disagree?
+
Requires justification and
reason-giving
People find common
ground, listening, more
likely to find agreement
Open ended, provisional
outcomes
+
Resolves disagreeement
through majoritarianism
(large numbers)
Respects preferences does
not judge
Produces determinate
outcomes (in principle!)
-
Does not require reasons,
no means to judge, how
well considered
No process for changing
views or challenging
methods
Black box
-
Often small numbers and
resource intensive activities
Questions of
representativeness
Means of achieving
consensus are often unclear
Black box

23. Part II
Ideas in progress
Incompletely Theorized Agreements
(Sunstein 1995, 1998; Ruger 2010, 2013)
Exploring consistency (coherence?) and
consensus

24. Sunstein (1995) Harvard Law Review
Sunstein (1998) Current Legal Prob
Prah Ruger 2010, 2013

25. Sunstein and ITA – in brief
– Views decisions at multiple levels, from most abstract to more
particular/specific
– An incompletely theorized agreement is one that is not
uniformly theorized at all levels, from high level justifications to
low level particulars (Prah Ruger 2013)
– We can reach some agreements without having to agree on the
foundations of morality (Sunstein 1995 Harvard Law Review;
1998 Current Legal Problems 51 1 267–298)
– Sunstein refers to law and sentencing. But he wants ITA to be
more and offers it as a form of practical reasoning, that we
might all be seen as judges… p277

27. Drawing on ITA
As an empirical framework for rendering
visible the structures in public values
In the context of health priority setting

28. Principles
Policies
Patients
public values and priorities for health

29. Patients
Principles
Policies
Choices between treatments for
different groups of patients in
the context of limited resources
Operational rules for
determining health care priority
setting
High level, normative
statements expressing
principles of health care
resource allocation
public values and levels of abstraction/
specificity

30. Patients
Principles
Policies
Choices between treatments for
different groups of patients in
the context of limited resources
Operational rules for
determining health care priority
setting
High level, normative
statements expressing
principles of health care
resource allocation
HEALTH
ECONOMISTS:
ENTER HERE
ETHICISTS:
ENTER HERE

31. Patients
Principles
Policies
Choices between treatments for
different groups of patients in
the context of limited resources
Operational rules for
determining health care priority
setting
High level, normative
statements expressing
principles of health care
resource allocation
Based on review of reasons/
theory/ experts
Based on principles and policies
Based on existing policies and
leading out of principles above
Choice based
methods
Q methodology
Choice based
methods

32. Principles
Policies
Patients

33. Principles
Policies
Patients
Q sort
orderings of
principle
statements
Choices
across
policies
Choices
between
groups of
patients
U E S/U WO
Pol
U
Pol
E
Pol
S
Pol
UE
Pol
EoL
Pol
cdf
Pol
y
Pol
z..
Patient
group A
Patient
group B
Patient
group C
Patient
group D
Patient
group …

34. Principles
Policies
Patients
Analysis of consistency
U E S/U WO
Pol
U
Pol
E
Pol
S
Pol
UE
Pol
EoL
Pol
cdf
Pol
y
Pol
z..
Patient
group A
Patient
group B
Patient
group C
Patient
group D
Patient
group …
(A= health maximising)
Q sort
orderings of
principle
statements
Choices
across
policies
Choices
between
groups of
patients

35. Principles
Policies
Patients
Analysis of (in) consistency
U E S/U WO
Pol
U
Pol
E
Pol
S
Pol
UE
Pol
EoL
Pol
cdf
Pol
y
Pol
z..
Patient
group A
Patient
group B
Patient
group C
Patient
group D
Patient
group …
(A= health maximising)
Q sort
orderings of
principle
statements
Choices
across
policies
Choices
between
groups of
patients

36. Principles
Policies
Patients
Analysis of consensus
(Incompletely specified and generalised
agreements)
U E S/U WO
Pol
U
Pol
E
Pol
S
Pol
UE
Pol
EoL
Pol
cdf
Pol
y
Pol
z..
Patient
group A
Patient
group B
Patient
group C
Patient
group D
Patient
group …
Q sort
orderings of
principle
statements
Choices
across
policies
Choices
between
groups of
patients
(A= health maximising)

38. Er… And?
• An explicit framework to examine consensus
and consistency
– Opening the black boxes?
• Exposing the structures and form of public values, being
explicit about consensus
– For health economists
• enriching choice data with principles and policies – and
examining the nature of preference heterogeneity
– For deliberative methodologists
• a means of selection and explicit reporting,
• Public values as part of the evidence to be considered
(Baltusson 2017)
– Amenable to (means of connecting) deliberative and
aggregative methods

39. Discussion points
• What is the state of the art in preference
heterogeneity? What do we do when people
disagree?
• If accept that public preferences are relevant -
should economists care about reasons as well as
preferences?
• Is exposing structures in public values at different
levels
– a useful way forward or
– a bad case of over engineering?

40. Ideas in progress: please get in
touch!
“Societal values and health policy making:
the role of consistency, coherence and
consensus”
Nov 2018 for 1 year
Wellcome Trust Small Grant
Networking, symposium, grant proposal writing
Rachel.Baker@gcu.ac.uk
Yunus Centre for Social Business and Health