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Ethical Challenges Related to Patient Involvement in Health Technology Assessment

Published online by Cambridge University Press:  28 June 2019

Meredith Vanstone Open the ORCID record for Meredith Vanstone [Opens in a new window] ,
Julia Abelson ,
Julia Bidonde ,
Kenneth Bond ,
Raquel Burgess ,
Carolyn Canfield ,
Lisa Schwartz  and
Laura Tripp
Meredith Vanstone*
Affiliation:
Department of Family Medicine, McMaster University, Hamilton OntarioCanada McMaster FHS Program for Education Research, Innovation, and Theory, McMaster University, Hamilton OntarioCanada Centre for Health Economics and Policy Analysis, McMaster University, Hamilton OntarioCanada
Julia Abelson
Affiliation:
Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton OntarioCanada Centre for Health Economics and Policy Analysis, McMaster University, Hamilton OntarioCanada
Julia Bidonde
Affiliation:
Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton OntarioCanada Canadian Agency for Drugs and Technologies in Health, Ottawa OntarioCanada Norwegian Institute of Public Health, Division of Health Services Oslo, Norway
Kenneth Bond
Affiliation:
Institute of Health Economics (IHE), Edmonton AlbertaCanada
Raquel Burgess
Affiliation:
Department of Family Medicine, McMaster University, Hamilton OntarioCanada
Carolyn Canfield
Affiliation:
Independent citizen-patient Faculty of Medicine, The University of British Columbia, Vancouver British ColumbiaCanada
Lisa Schwartz
Affiliation:
Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton OntarioCanada Centre for Health Economics and Policy Analysis, McMaster University, Hamilton OntarioCanada
Laura Tripp
Affiliation:
Centre for Health Economics and Policy Analysis, McMaster University, Hamilton OntarioCanada
*
Author for correspondence: Meredith Vanstone, [email protected]
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Abstract

Including information and values from patients in HTA has the potential to improve both the process and outcomes of health technology policy decisions. Accordingly, funding and structural incentives to include patients in HTA activities have increased over the past several years. Unfortunately, these incentives have not yet been accompanied by a corresponding increase in resources, time, or commitment to responsiveness. In this Perspectives piece, we reflect on our collective experiences participating in, conducting, and overseeing patient engagement activities within HTA to highlight the ethical challenges associated with this area of activity. While we remain committed to the idea that patient engagement activities strengthen the findings, relevance, and legitimacy of health technology policy, we are deeply concerned about the potential for these activities to do ethical harm. We use this analysis to call for action to introduce strong protections against ethical violations that may harm patients participating in HTA engagement activities.

Keywords

Patient engagementPatient involvementPatient participationEthicsHealth technology assessment
Type
Perspective
Information
International Journal of Technology Assessment in Health Care , Volume 35 , Issue 4 , 2019 , pp. 253 - 256
Copyright
Copyright © Cambridge University Press 2019 

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Footnotes

We acknowledge the many contributions to our analysis that were prompted by conversations with patients, HTA agencies, policy makers, and research colleagues. Salaries for M.V., R.B., and L.T. are supported by funding from the Government of Ontario and the Ontario SPOR Support Unit, which is supported by the Canadian Institutes of Health Research and the Government of Ontario (J.A., M.V., no grant number). At the time the work was completed, J.B. was a Health Systems Impact Fellow, supported by the Canadian Institutes of Health Research and the Canadian Agency for Drugs and Technologies in Health (J.A., M.V., L.S., K.B.).

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