What Forms of Public Engagement are Appropriate for Drug Policy? What Does the Evidence Say: HTA to...
-
Upload
nya-shedrick -
Category
Documents
-
view
215 -
download
0
Transcript of What Forms of Public Engagement are Appropriate for Drug Policy? What Does the Evidence Say: HTA to...
What Forms of Public Engagement are Appropriate for Drug Policy?
What Does the Evidence Say: HTA to Support Policy and Practice2015 CADTH Symposium
April 12-14, 2015 Saskatoon, SK
Michael M BurgessProfessor and Research Chair in Biomedical Ethics
W. Maurice Young Centre for Applied EthicsSchool of Population and Public Health
Department of Medical Genetics
No Conflict of Interest, but . . .• BC BioLibrary: Banking for Health
(a MSFHR Technology/Methodology Platform)
• BC Cancer Agency Tumour Tissue Repository
• Better Biomarkers of Acute and Chronic Allograft Rejection (Genome Canada)
• Canadian Biotechnology Secretariat
• Canadian Cancer Society and AARC
• Canadian Institutes for Health Research
• Canadian Partnership for Tomorrow
• Canadian Tumour Repository Network
• Ethics Office, Canadian Institutes of Health Research (CIHR)
• Genome Canada• Genome BC• Institute for Genetics, CIHR• The James Hogg iCAPTURE Centre,
St. Paul’s Hospital• Mayo Clinic, Rochester, Minnesota• Michael Smith Foundation for
Health Research, BC• National Human Genome Research
Institute, U01HG04599 • UBC Provost’s Office• Western Australia Department of
Population Health
Deliberative eventsBC Biobank deliberation
Vancouver April/May 2007
Mayo Clinic, Biobanks September 2007
Rochester Epidemiology Proj. November 2011
Western Australia Stakeholders: Aug 2008
Public: November 2008
Salmon Genomics Vancouver November 2008
BC BioLibrary Vancouver March 2009
RDX Bioremediation
Vancouver April 2010
Biofuels
Montreal Sept/Oct 2012
Biobank Project Tasmania
April 2013
California Biobanks
LA: May 2013
SF: Sept/Oct 2013
Priority setting in Cancer Control
Vancouver June, 2014
Newborn Screening
California Sept/Oct 2015
Rowe & Frewer, Typology (2005)
Participation
Consultation
Communication
Arnstein, Sherry R. Journal of the American Planning Association, 35(4):216-224.
Rowe, Gene & Lynn J. Frewer. Science, Technology & Human Values 30(2):251-290.
Flow of Information
SPONSOR
PUBLIC
REPS
Strengthening democracythrough shared
knowledge
Participedia’s strategy is simple: crowd-source data on democratic innovations from around the world from contributors like yourself and then aggregate this into an open, public database that continually updates with new contributions.
www.participedia.net
Rowe & Frewer, Typology (2005)
Participation
Consultation
Communication
Flow of Information
SPONSOR
PUBLIC
REPS
• Trustworthy governance• Incorporate informed civic
views• Assign relative weights in
trade-off• Identify what information is
most needed by P&P• Canadian public values• Increase credibility• Stimulate public trust• Provide detailed public
information
What is the goal?
Invitation to reflect
Deciding how and who to engage is an act of reifying particular concepts of patients, publics and ethics• “Patients” and “public” are convenient
abstractions for engagement • PPE does not provide ethical principles or values1. Illustrate with reference deliberative public
engagement2. Implications for planning PPE, governance and
advisories
Ethics in PPE
• How can we live together while respecting diversity of opinion?– Supplement expert opinion– Experienced (patient) and stewardship (public) views
• What processes render acceptable or trustworthy decisions?– Innovation in governance and use of advisories
• Requires that decision makers – Want input – Willing to use and respond to input
• What recruitment will reduce attracting people with settled opinions?
Representation and reification
How do we represent patients and public?
• Reify: to regard something abstract as a material or concrete thing
• turning people into groups defined by one aspect of their identity
• fallacy of misplaced concreteness
Complex & Messy
• All of us have a variety of interests and roles, sometimes conflicting
• Interest priority changes; time & situations• Not possible to construct a representative
sample of such complicated and variable set• Goal is to get “representation” of wide
diversity of interests in a population, relative to an issue
Is Representation Impossible?• Consumer participation might improve deliberation
about some matters, but it is unlikely that we could ever enlist active enough consumer participation to deliberation about limit setting. . . . there is no realistic mechanism for making consumers who participate truly representative of the consumer population as a whole.
N Daniels & J Sabin 1998. The ethics of accountability in managed care reform. Health Affairs. 17 (5):61
Ways we “constitute the public(s)”
• Process
• Recruitment
• Deliberative questions and information
• Outputs
Evaluation of Deliberation
1. Representation
2. Structure of process or procedures
3. Information used in process
4. Outcomes and decisions arising
Abelson J, et al 2003. Deliberations about deliberative methods: issues in the design and evaluation of public participation processes. Social Science and Medicine 57, 239-251.
Cf., Beierle, 1999. Webler, 1995.
2006 International WorkshopDeliberative Democracy & Biobanks
Democracy & engagement• Archon Fung, Kennedy School of
Government, Harvard University
• John Gastil, Communication, University of Washington
• Simon Niemeyer, Australian National University
• Mark Warren, Political Science, University of British Columbia
• Janet Joy, Community engagement, Vancouver Coastal Health Authority
Genomics & biobanks• Angela Brooks-Wilson, Genome
Sciences Centre, BC Cancer Research Centre • Peter Watson, BC Cancer Agency Tumor
Tissue Repository. PI BC BioLibrary
• Richard Hegele, UBC & iCAPTURE Centre
Ethics & law• Susan Dodds, University of Tasmania
(then U of Wollongong), Australia
• Barbara Koenig, UCSF (then Mayo Clinic, Minnesota)
• Nola Ries, University of Victoria
25 Demographically Stratified Participants
Pre-circulatedwebsite &materials
PolicyUptake
12 day break
dialogue &informationMedia and
Public Uptake
Reports,articles & online
materials
Second Weekend
Deliberation
Provide policy advice, noting areas of consensus and persistent disagreement
First WeekendInformation
Expert & StakeholderQ&A
Identify hopes and concerns
Structuring a Deliberative Process
EmergentPolicy, practice & governance
Deliberative Democracy
PW Hamlett (2003). Technology theory and deliberative democracy. Science, Technology, & Human Values 28 (1): 121-2.
express a reasoned, informed, consensual judgment forged out of the initially disparate knowledge, values, and preferences of the participants, as these have evolved through the deliberative experience itself.
not simply to ensure that “excluded groups” are given access to decision making about technology, however desirable this may be in itself. . .
Deliberative Process
• Organize and facilitate to stimulate full participation and expression of interests– Strong facilitation, usually small and large groups
• Expert support to avoid unnecessary ambiguity and misunderstanding– Held in check to avoid dominance
• Decision maker participation– Translation and participant motivation
• Encourage clarity of persistent disagreement– Better to understand lack of convergence than to force
consensus
Deliberative Engagement
• Successful and productive– MM Burgess, KC O'Doherty, DM Secko (2008). Biobanking in BC: Enhancing discussions of the future of
personalized medicine through deliberative public engagement. Personalized Medicine.
• Incorporates wide diversity of perspectives– H Longstaff, MM Burgess (2010). Recruiting for representation in public deliberation on the ethics of
biobanks. Public Understanding of Science.
• Critically appraises and utilizes technical info– S MacLean, MM Burgess (2010). In the Public Interest: Stakeholder Influence in Public Deliberation
about Biobanks. Public Understanding of Science.– ES Wilcox (2009). Does "Misinformation" Matter? Exploring the Roles of Technical and Conceptual
Inaccuracies In a Deliberative Public Engagement on Biobanks. MA Thesis, UBC.
• Informative– DM Secko, N Preto, S Niemeyer, MM Burgess (2009). Informed Consent in Biobank Research: Fresh
Evidence for the Debate. Social Science & Medicine.– KC O'Doherty, MM Burgess (2009). Engaging the public on biobanks: Outcomes of the BC Biobank
Deliberation'. Public Health Genomics.
Recruiting for diversity of Interests
Goodin, RE, Dryzek, JS 2006. Deliberative Impacts: The Macro-Political Uptake of Mini-Publics. Politics & Society, 34(2): 219-244.
“mini-public” can provide insight into how informed and deliberating citizens understand and assess important issues
We recruited on life experience & value• Demographic proxy for life experience• Utility proxy for value
Created a sample of 30 (from 80) using novel sampling strategyFuture work to incorporate ‘reasoning’
Identifying a “Representative Public”: Dean Regier, Ph.D.
20
Public Expertise & Deliberation
What are good measures of effectiveness and cost-effectiveness?
How can the health care system be more sustainable?
Would [this proposal] encourage increased physical activity or improved
diet in your community?
What would be necessary for you to trust decisions to include or exclude health services?
Public Expertise
• Engaged as citizens– Reflect diversity of life experience and goals
• Including vocational, domestic and social expertise• as individuals and understanding each other
– Values and how they influence• Acceptable risks• Trade-offs• Uncertainty and diversity
– Practical knowledge about their own world• Trustworthiness of decision making emerges
Under what circumstances is there an obligation to continue to fund a cancer drug? (Disinvestment)
How much additional duration of life is needed to justify doubling the budget?
How much additional quality of life is needed to justify doubling the budget?
What would make drug funding decisions trustworthy?
Priority setting & the high cost of cancer drugs: Key deliberative questions
23
Stuart Peacock, Colene Bentley, BCCRC
Output and Translation
• Honor responsibilities to participants– We ratify and publish “deliberative conclusions”– Include reasons, qualifications – Persistent disagreements recognized as
conclusions– Avoid majoritarian tendencies like quantification
• Assess engagement for dominance (e.g., polarization)
• Decision makers in events
Experiments in Trustworthy Governance
“. . .resolving the ethical problems inherent in biobanking lies in appropriate governance.”
“. . .assessment of experiments with different forms of governance holds the most hope for balancing protection of participants with the development and distribution of benefits derived from research using biobanks.”
T Caulfield, AL. McGuire, M Cho, et al (2008). Research Ethics Recommendations for Whole Genome Research: Consensus Statement. PLOS Biology 6.3: 430 – 435.
K O’Doherty, MM Burgess, K Edwards, R Gallagher, A Hawkins, J Kaye, V McCaffrey, D Winickoff (2011). Adaptive Governance for Biobanks. Social Science & Medicine. 73: 367-374.
Participatory Governance• The “public” can incorporate technical and
social information and contribute to decisions– decision makers’ confidence in public’s capacity
• Direct representation for trustworthy governance: Advisories & engagement– Representation of diverse public interests– Resources to seek wider public input
MM Burgess (2014). From “trust us” to participatory governance: Deliberative publics and science policy. Public Understanding of Science.
Creating Opportunities & Communities
• Explicitly construct groups engaged• “Value” and choices by a population vary across
time and situations• Represent diversity of interests• Event-based PPE is inadequate: participatory
governance is required• Advisories need a way to refresh and reconnect
with the messy world they are to reflect• These are experiments: Assess!
What Forms of Public Engagement are Appropriate for Drug Policy?
What Does the Evidence Say: HTA to Support Policy and Practice2015 CADTH Symposium
April 12-14, 2015 Saskatoon, SK
Michael M BurgessProfessor and Research Chair in Biomedical Ethics
W. Maurice Young Centre for Applied EthicsSchool of Population and Public Health
Department of Medical Genetics