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The rationale and design of public involvement in health-funding decision making: focus groups with the Canadian public

Published online by Cambridge University Press:  05 August 2020

Edilene Lopes Open the ORCID record for Edilene Lopes [Opens in a new window] ,
Jackie Street Open the ORCID record for Jackie Street [Opens in a new window] ,
Tania Stafinski ,
Tracy Merlin  and
Drew Carter
Edilene Lopes*
Affiliation:
Adelaide Health Technology Assessment, School of Public Health, The University of Adelaide, Adelaide, Australia
Jackie Street
Affiliation:
School of Public Health, Faculty of Health and Medical Sciences, The University of Adelaide, Mail Drop 545 or 511, Level 9, Adelaide Health & Medical Sciences Building, Adelaide, SA5005, Australia School of Health and Society, Faculty of Social Sciences, University of Wollongong, Wollongong, Australia
Tania Stafinski
Affiliation:
Health Technology and Policy Unit, School of Public Health, University of Alberta, Edmonton, Canada
Tracy Merlin
Affiliation:
Adelaide Health Technology Assessment, School of Public Health, The University of Adelaide, Adelaide, Australia
Drew Carter
Affiliation:
Adelaide Health Technology Assessment, School of Public Health, The University of Adelaide, Adelaide, Australia
*
Author for correspondence: Edilene Lopes, E-mail: [email protected]
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Abstract

Background

Worldwide, governments employ health technology assessment (HTA) in healthcare funding decision making. Requests to include public perspectives in this are increasing, with the idea being that the public can identify social values to guide policy development, increasing the transparency and accountability of government decision making.

Objective

To understand the perspectives of the Canadian public on the rationale and design of public involvement in HTA.

Design

A demographically representative sample of residents of a Canadian province was selected to take part in two sets of two focus groups (sixteen people for the first set and twenty for the second set).

Results

Participants were suspicious of the interests driving various stakeholders involved in HTA. They saw the public as uniquely impartial though also lacking knowledge about health technologies. Participants were also suspicious of personal biases and commended mechanisms to reduce their impact. Participants suggested various involvement methods, such as focus groups, citizens' juries and surveys, noting advantages and disadvantages belonging to each and commending a combination.

Discussion and conclusions

We identified a lack of public understanding of how decisions are made and distrust concerning whose interests and values are being considered. Public involvement was seen as a way of providing information to the public and ascertaining their views and values. Participants suggested that public involvement should employ a mixed-methods strategy to support informed debate and participation of a large number of people.

Keywords

Public involvementHealth technology assessmentSoft systems methodologyComplex adaptive systemFocus groups
Type
Policy
Information
International Journal of Technology Assessment in Health Care , Volume 36 , Issue 6 , December 2020 , pp. 592 - 598
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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References

Banta, D. The development of health technology assessment. Health Policy. 2003;63:121–32.CrossRefGoogle ScholarPubMed
Hailey, D, Werkö, S, Bakri, R, Cameron, A, Göhlen, B, Myles, S et al. Involvement of consumers in health technology assessment activities by INAHTA agencies. Int J Technol Assess Health Care. 2013;29:79–83.CrossRefGoogle ScholarPubMed
Gauvin, F-P, Abelson, J, Giacomini, M, Eyles, J, Lavis, JN. Moving cautiously: Public involvement and the health technology assessment community. Int J Technol Assess Health Care. 2011;27:43–9.CrossRefGoogle ScholarPubMed
Menon, D, Stafinski, T. Role of patient and public participation in health technology assessment and coverage decisions. Expert Rev Pharmacoeconomics Outcomes Res. 2011;11:75–89.CrossRefGoogle ScholarPubMed
Nilsen, ES, Myrhaug, HT, Johansen, M, Oliver, S, Oxman, AD. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database of Syst Rev. 2006;3. Available from: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004563.pub2/abstract; http://onlinelibrary.wiley.com/store/10.1002/14651858.CD004563.pub2/asset/CD004563.pdf?v=1&t=hr1edexz&s=95fb942f050cc9614028ee96cf3423dcfed02454.Google Scholar
Facey, K, Boivin, A, Gracia, J, Hansen, HP, Lo Scalzo, A, Mossman, J et al. Patients' perspectives in health technology assessment: A route to robust evidence and fair deliberation. Int J Technol Assess Health Care. 2010;26:334–40.CrossRefGoogle ScholarPubMed
Rosenberg-Yunger, ZRS, Thorsteinsdottir, H, Daar, AS, Martin, DK. Stakeholder involvement in expensive drug recommendation decisions: An international perspective. Health Policy. 2012;105:226–35.CrossRefGoogle Scholar
Hunter, DJ, Kieslich, K, Littlejohns, P, Staniszewska, S, Tumilty, E, Weale, A et al. Public involvement in health priority setting: Future challenges for policy, research and society. J Health Organ Manag. 2016;30:796–808.CrossRefGoogle ScholarPubMed
Lopes, E, Street, J, Carter, D, Merlin, T. Involving patients in health technology funding decisions: Stakeholder perspectives on processes used in Australia. Health Expect. 2016;19:331–44.CrossRefGoogle ScholarPubMed
Marchildon, GP. Canada: Health system review 2013. UK: European Observatory on Health Systems and Policies; 2013.Google Scholar
CADTH. Patient and Community Engagement. 2019 [cited 2019 11/02]; Available from: https://www.cadth.ca/patient-and-community-engagement.Google Scholar
Plsek, PE, Greenhalgh, T. The challenge of complexity in health care. Br Med J. 2001;323:625–8.CrossRefGoogle ScholarPubMed
Checkland, P, Poulter, J. Learning for action: A short definitive account of Soft Systems Methodology and its use for practitioners. Chichester, England: John Wiley & Sons; 2006. 200 p.Google Scholar
Grimmelikhuijsen, S, Porumbescu, G, Hong, B, Im, T. The effect of transparency on trust in government: A cross-national comparative experiment. Public Adm Rev. 2013;73:575–86.CrossRefGoogle Scholar
Job, J. How is trust in government created? It begins at home, but ends in the parliament. Aust Rev Public Aff. 2005;6:1–23.Google Scholar
Marien, S, Hooghe, M. Does political trust matter? An empirical investigation into the relation between political trust and support for law compliance. Eur J Polit Res. 2011;50:267–91.CrossRefGoogle Scholar
Poetz, A. What's your “position” on nuclear power? An exploration of conflict in stakeholder participation for decision-making about risky technologies. Risk Hazards Crisis in Public Policy. 2011;2:1–38. https://doi.org/10.2202/1944-4079.1081.CrossRefGoogle Scholar
Moe, TM. Vested interests and political institutions. Polit Sci Quart. 2015;130:277–318.CrossRefGoogle Scholar
Bozeman, B. Public values and public interest: Counterbalancing economic individualism. Washington, DC: Georgetown University Press; 2007 [cited 2020 27/04]. Available from: http://ebookcentral.proquest.com/lib/adelaide/detail.action?docID=547786.)Google Scholar
Bevir, M. Encyclopedia of political theory—participatory democracy. Thousand Oaks, California: Sage Publications; 2010.CrossRefGoogle Scholar
Bevir, M. Encyclopedia of political theory—representative democracy. Thousand Oaks, California: Sage Publications; 2010.CrossRefGoogle Scholar
Lopes, E, Carter, D, Street, J, Stafinski, T, Merlin, T. DPC paper, Adelaide (unpublished).Google Scholar
Fox, JA. Social accountability: What does the evidence really say? World Dev. 2015;72:346–61.CrossRefGoogle Scholar
Martin, GP. “Ordinary people only”: Knowledge, representativeness, and the publics of public participation in healthcare. Sociol Health Illness. 2007;30:35–54.CrossRefGoogle Scholar
Côté, M-A, Bouthillier, L. Assessing the effect of public involvement processes in forest management in Quebec. For Policy Econ. 2002;4:213–25.CrossRefGoogle Scholar
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