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Ethical Challenges Related to Patient Involvement in Health Technology Assessment

  • Meredith Vanstone (a1) (a2) (a3), Julia Abelson (a4) (a3), Julia Bidonde (a4) (a5) (a6), Kenneth Bond (a7), Raquel Burgess (a1), Carolyn Canfield (a8) (a9), Lisa Schwartz (a4) (a3) and Laura Tripp (a3)...

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.

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Corresponding author

Author for correspondence: Meredith Vanstone, meredith.vanstone@mcmaster.ca

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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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References

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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.
2.Ocloo, J, Matthews, R (2016) From tokenism to empowerment: Progressing patient and public involvement in healthcare improvement. BMJ Qual Saf 25, 626632.
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.
4.Bogolub, E (2010) The obligation to bring about good in social work research: A new perspective. Qual Soc Work 9, 915.
5.Bridges, JF, Jones, C (2007) Patient-based health technology assessment: A vision of the future. Int J Technol Assess Health Care 23, 3035.
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.
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/.
8.Fung, A (2015) Putting the public back into governance: The challenges of citizen participation and its future. Public Adm Rev 75, 513–22.
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.
10.Domecq, JP, Prutsky, G, Elraiyah, T, et al. (2014) Patient engagement in research: a systematic review. BMC Health Serv Res 14, 89.
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.
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.
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.
14.Fricker, M (1999) Epistemic oppression and epistemic privilege. Can J Philos 29(Supp1), 191210.
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.
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.
17.Bowman-Busato, J (2011) Patient engagement in health technology assessment (HTA). Pharm Policy Law 13, 193201.
18.Williamson, L (2014) Patient and citizen participation in health: The need for improved ethical support. Am J Bioeth 14, 416.
19.Koch, T, Harrington, A (1998) Reconceptualizing rigour: The case for reflexivity. J Adv Nurs 28, 882890.
20.Robillard, JM, Feng, TL (2017) When patient engagement and research ethics collide: Lessons from a dementia forum. J Alzheimers Dis 59, 110.
21.Van de Bovenkamp, HM, Trappenburg, MJ, Grit, KJ (2010) Patient participation in collective healthcare decision making: The Dutch model. Health Expect 13, 7385.
22.Johannesen, J (2018) Patient Views on “Ladders of Engagement”. Toronto: Ontario SPOR Support Unit.
23.Medina, J (2017) Varieties of Hermeneutical Injustice 1. The Routledge Handbook of Epistemic Injustice. Abington, UK: Routledge; 2017. p. 4152.
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.

Keywords

Ethical Challenges Related to Patient Involvement in Health Technology Assessment

  • Meredith Vanstone (a1) (a2) (a3), Julia Abelson (a4) (a3), Julia Bidonde (a4) (a5) (a6), Kenneth Bond (a7), Raquel Burgess (a1), Carolyn Canfield (a8) (a9), Lisa Schwartz (a4) (a3) and Laura Tripp (a3)...

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