1) There are two problems with not involving the public in healthcare decision making: public values are viewed as biased, and this can lead to misallocation of resources. 2) Involving the public is important for both normative democratic reasons and pragmatic reasons like improving comparative effectiveness research. Barriers include a perception that public input is biased. 3) A study tested whether a video introduction could better engage respondents in a stated preference study on incidental genomic findings and mitigate hypothetical bias compared to a text only introduction. Preliminary results found lower willingness to pay values in the video group, suggesting it may reduce bias.

1. Advancing Health Economics,
Services, Policy and Ethics
2015 CADTH Symposium
Saskatoon, Saskatchewan
Dean A Regier, PhD
Cancer Control Research, BC Cancer Agency
Assistant Professor, School of Population and
Public Health, University of British Columbia

2. Problem #1
• Input from the public is not routinely pursued in
health-care decision-making
• Public values viewed as biased
Problem #2
• Public values are (probably) biased
• Leads to misallocation of scarce resources
Public Engagement & Value
2

3. Involving the public in policy-forming activities
• Public includes patient/lay public
Normative & pragmatic motivations
• Democratic ideals; economic theory
• Comparative-effectiveness
Why Public Engagement?
3

4. 4*Regier DA, Bentley C, Mitton C, et al. Public Engagement in Priority-Setting: Results from a pan-Canadian Survey of Decision-Makers in Cancer
Control. Social Science & Medicine; 2014: 122:130-139.
Relative to clinical effectiveness and cost
• Input from the public is rarely pursued
Barriers
• Implies public input is biased

5. Stated preference elicitation of utility
• Non-market valuation of goods
Hypothetical bias
• Benefit over-valuation leads to investing in goods
that cost too much in terms of available alternatives
Mitigating hypothetical bias
• Rationality tests; cheap-talk; oath
Public Engagement & Bias
5

6. Communication theory
The medium is the
message - McLuhan, 1964
• The medium delivers
change separate from
content
6
Hypothesis: a video introduction to a stated preference
study will differently engage respondents and mitigate
hypothetical bias

7. Next generation genomic sequencing
• Predictive therapy, prognostic therapy, hereditary
cause of disease
Potential of incidental findings
• Information on diseases not related to current
diagnosis
Background
7

8. Published list of incidental findings (Green et al, 2013)
• High-penetrance & clinical utility
• List of 56 genes, 24 disorders
• Labs look for mutations, IF’s returned to patient,
through managing physician
Controversial
• Patients not offered a choice
• (Public not consulted)
ACMG Recommendations
8

9. Objective
• Personal utility for the return incidental findings
• Discrete choice experiment (two choice + opt-out)
Respondent Sample
• General public in Canada (N=1200)
• English and French language versions
Objective & Sample
9

10. Define Attributes/levels
• Cognitive interviews (n=6)/ 2 focus groups (n=12)
Experimental design
• D-efficient design with informative priors
Statistical Analysis
• Mixed Logit Model (preference heterogeneity)
Welfare analysis
• Willingness to pay (compensating variation)
Methods Approach
10

11. Evaluate difference
in welfare estimates
D1
D2
D3
Text Introduction
Only
Study design
Video Introduction
& Text Intro
English-speaking
Respondents
D4
randomized randomized
11

12. Choice task example
12
Option A Option B No information
Diseases with a 80% lifetime risk or higher Diseases with a 5% lifetime risk or higher No information
Recommended effective medical treatment and
lifestyle change
Recommended effective medical treatment
only
No information
Mild health consequences Moderate health consequences No information
Does not provide information on carrier status Information on if your family members could
be affected
No information
$425 $1500 $ 0
Option A  Option B  No Information 
Disease Risk
More disease will be identified if
the lifetime risk is lower
Disease Treatability
Disease Severity
Health consequences of the
diseases you may develop
You m
Carrier Status
Disease risk not affecting you
but can affect your family
Cost to you

13. 13
Video+Text
Version
Text Version
Scenario 1
Medical treatment , 80% or
greater risk, severe QOL
$420
95% CI 191-528
$515
95% CI 417-778
Scenario 2 (vs Scenario 1)
Medical & No treatment , 80%
or greater risk, severe QOL
$235
95% CI 195-275
$320
95% CI 225-371
*t-test (unequal variances)=-1.66, p-val=0.11
• Lower WTP values in video version
• Potential to mitigate hypothetical bias
Welfare Analysis

14. 1. Is it necessary for decision-makers to consult the
public for each health care
investment/disinvestment decisions?
2. Willingness to pay (and utility) is often biased, is
there a role for this metric in decision-making?
• Focus on naturalistic units?
3. Do researchers need do more with how the public
is engaged?
Questions
14

15. Advancing Health Economics, Services, Policy and Ethics
Thank-you
• Acknowledgements: Stuart
Peacock, Reka Pataky, Kimberly
van der Hoek, Gail Jarvik, Jeffrey
Hoch, David Veenstra
15
• Funding for this research obtained
from the Canadian Centre for
Applied Research in Cancer
Control (ARCC); ARCC is funded by
the Canadian Cancer Society
Research Institute grant #019789,
#703549