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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*
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, meredith.vanstone@mcmaster.ca

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.

Type
Perspective
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.).

References

1.Abelson, J, Wagner, F, DeJean, D, et al. (2016) Public and patient involvement in health technology assessment: A framework for action. Int J Technol Assess Health Care 32, 256264.Google Scholar
2.Ocloo, J, Matthews, R (2016) From tokenism to empowerment: Progressing patient and public involvement in healthcare improvement. BMJ Qual Saf 25, 626632.Google Scholar
3.Staniszewska, S, Werko, S (2017) Patient-based evidence in HTA. In: Facey, K, Ploug Hansen, H, Single, A, eds. Patient Involvement in Health Technology Assessment. Singapore: Adis, Springer Nature; p. 4351.Google Scholar
4.Bogolub, E (2010) The obligation to bring about good in social work research: A new perspective. Qual Soc Work 9, 915.Google Scholar
5.Bridges, JF, Jones, C (2007) Patient-based health technology assessment: A vision of the future. Int J Technol Assess Health Care 23, 3035.Google Scholar
6.Pittaway, E, Bartolomei, L, Hugman, R (2010) ‘Stop stealing our stories’: The ethics of research with vulnerable groups. J Hum Rights Pract 2, 229251.Google Scholar
7.CIHR, NSERC, SSHRC (2014) Tri-Council Policy Statement: Ethical Conduct For Research Involving Humans. Canada Secretariat on Responsible Conduct of Research 2014. http://www.pre.ethics.gc.ca/eng/index/.Google Scholar
8.Fung, A (2015) Putting the public back into governance: The challenges of citizen participation and its future. Public Adm Rev 75, 513–22.Google Scholar
9.Gagnon, M-P, Desmartis, M, Lepage-Savary, D, et al. (2011) Introducing patients’ and the public's perspectives to health technology assessment: A systematic review of international experiences. Int J Technol Assess Health Care 27, 3142.Google Scholar
10.Domecq, JP, Prutsky, G, Elraiyah, T, et al. (2014) Patient engagement in research: a systematic review. BMC Health Serv Res 14, 89.Google Scholar
11.Shah, SGS, Robinson, I (2007) Benefits of and barriers to involving users in medical device technology development and evaluation. Int J Technol Assess Health Care 23, 131137.Google Scholar
12.Joseph-Williams, N, Elwyn, G, Edwards, A (2014) Knowledge is not power for patients: A systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns 94, 291309.Google Scholar
13.Lopes, E, Carter, D, Street, J (2015) Power relations and contrasting conceptions of evidence in patient-involvement processes used to inform health funding decisions in Australia. Soc Sci Med 135, 8491.Google Scholar
14.Fricker, M (1999) Epistemic oppression and epistemic privilege. Can J Philos 29(Supp1), 191210.Google Scholar
15.de Freitas, C (2015) Aiming for inclusion: A case study of motivations for involvement in mental health-care governance by ethnic minority users. Health Expect 18, 10931104.Google Scholar
16.Facey, K, Boivin, A, Gracia, J, et al. (2010) Patients’ perspectives in health technology assessment: A route to robust evidence and fair deliberation. Int J Technol Assess Health Care 26, 334340.Google Scholar
17.Bowman-Busato, J (2011) Patient engagement in health technology assessment (HTA). Pharm Policy Law 13, 193201.Google Scholar
18.Williamson, L (2014) Patient and citizen participation in health: The need for improved ethical support. Am J Bioeth 14, 416.Google Scholar
19.Koch, T, Harrington, A (1998) Reconceptualizing rigour: The case for reflexivity. J Adv Nurs 28, 882890.Google Scholar
20.Robillard, JM, Feng, TL (2017) When patient engagement and research ethics collide: Lessons from a dementia forum. J Alzheimers Dis 59, 110.Google Scholar
21.Van de Bovenkamp, HM, Trappenburg, MJ, Grit, KJ (2010) Patient participation in collective healthcare decision making: The Dutch model. Health Expect 13, 7385.Google Scholar
22.Johannesen, J (2018) Patient Views on “Ladders of Engagement”. Toronto: Ontario SPOR Support Unit.Google Scholar
23.Medina, J (2017) Varieties of Hermeneutical Injustice 1. The Routledge Handbook of Epistemic Injustice. Abington, UK: Routledge; 2017. p. 4152.Google Scholar
24.Hunter, A, Facey, K, Thomas, V, et al. (2018) EUPATI guidance for patient involvement in medicines research and development: Health technology assessment. Front Med (Lausanne) 5, 231.Google Scholar