Hostname: page-component-8448b6f56d-jr42d Total loading time: 0 Render date: 2024-04-20T03:53:07.209Z Has data issue: false hasContentIssue false
  • English
  • Français

An institutional ethnographic analysis of public and patient engagement activities at a national health technology assessment agency

Published online by Cambridge University Press:  09 February 2021

Julia Bidonde Open the ORCID record for Julia Bidonde [Opens in a new window] ,
Meredith Vanstone Open the ORCID record for Meredith Vanstone [Opens in a new window] ,
Lisa Schwartz  and
Julia Abelson
Julia Bidonde*
Affiliation:
Centre for Health Economics and Policy Analysis, McMaster University, Hamilton, Canada Health Systems Impact Fellow, McMaster University, Hamilton, Canada Norwegian Institute of Public Health, P. O. Box 222 Skøyen, OsloN-0213, Norway
Meredith Vanstone
Affiliation:
Centre for Health Economics and Policy Analysis, McMaster University, Hamilton, Canada Department of Family Medicine, McMaster University, Hamilton, Canada
Lisa Schwartz
Affiliation:
Centre for Health Economics and Policy Analysis, McMaster University, Hamilton, Canada Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Canada
Julia Abelson
Affiliation:
Centre for Health Economics and Policy Analysis, McMaster University, Hamilton, Canada Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Canada
*
Author for correspondence: Julia Bidonde, E-mail: julia.bidonde@york.ac.uk
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

The practice of public and patient engagement (PPE) in health technology assessment (HTA) has spread worldwide, yet gaps in knowledge remain. We carried out an institutional ethnography of the Canadian Agency for Drugs and Technologies in Health (CADTH) public and patient involvement in HTA.

Methods

The research took place over 15 months and included observational work in the institutional settings, text review, and interviews with individuals working for or involved with the agency.

Results

We found that despite demonstrated commitment to PPE, organizational history, governance structure, and practices were impediments to a unified approach to PPE. Unclear role descriptions for committee members and differences in philosophy and priority given to PPE across the organization presented challenges to effective participation. The high degree of value given to evidence-based principles at times conflicted with meaningful integration of patient input. A lack of clear goals and processes, roles, and differential treatment of evidence in PPE served to minimize the importance of patient experiences and to displace their validity. An acknowledgment of conflicts between multiple epistemic traditions at work within HTA activities may strengthen organizational approaches to PPE.

Conclusion

HTA organizations can learn from this study by reflecting on the challenges described and the recommendations offered to address them. We suggest solidifying CADTH's commitment to PPE with clear agency-wide roles and direction, values, and outcomes, a comprehensive framework, and policy and procedures. An acknowledgment of diverse epistemic traditions, as well as leadership and expertise in PPE, will strengthen CADTH's PPE activities and sustain its leadership position in the HTA field.

Keywords

Public–patient participationCommunity participationQualitative researchTechnology assessmentHealth planning organizations
Type
Assessment
Information
International Journal of Technology Assessment in Health Care , Volume 37 , Issue 1 , 2021 , e37
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press on behalf of the Microscopy Society of America

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Dipankui, MT, Gagnon, MP, Desmartis, M, Legare, F, Piron, F, Gagnon, J, et al. Evaluation of patient involvement in a health technology assessment. Int J Technol Assess Health Care. 2015;31:166–70.CrossRefGoogle Scholar
Menon, D, Stafinski, T. Role of patient and public participation in health technology assessment and coverage decisions. Expert Rev Pharmacoecon Outcomes Res. 2011;11:75–89.CrossRefGoogle ScholarPubMed
Wortley, S, Street, J, Lipworth, W, Howard, K. What factors determine the choice of public engagement undertaken by health technology assessment decision-making organizations? J Health Organ Manag. 2016;30:872–90.CrossRefGoogle ScholarPubMed
Abelson, J, Wagner, F, DeJean, D, Boesveld, S, Gauvin, FP, Bean, S, et al. Public and patient involvement in health technology assessment: A framework for action. Int J Technol Assess Health Care. 2016;32:256–64.CrossRefGoogle Scholar
Health Quality Ontario. Engaging with patients and caregivers about quality improvement. A guide for health care providers. Toronto, ON: Health Quality Ontario; 2016.Google Scholar
Hameen-Anttila, K, Komulainen, J, Enlund, H, Makela, M, Makinen, E, Rannanheimo, P, et al. Incorporating patient perspectives in health technology assessments and clinical practice guidelines. Res Social Adm Pharm. 2016;12:903–13.CrossRefGoogle ScholarPubMed
Shippee, ND, Domecq Garces, JP, Prutsky Lopez, GJ, Wang, Z, Elraiyah, TA, Nabhan, M, et al. Patient and service user engagement in research: A systematic review and synthesized framework. Health Expect. 2015;18:1151–66.CrossRefGoogle ScholarPubMed
Single, ANV, Facey, KM, Livingstone, H, Silva, AS. Stories of patient involvement impact in health technology assessments: A discussion paper. Int J Technol Assess Health Care. 2019;35:266–72.CrossRefGoogle ScholarPubMed
Hunter, A, Facey, K, Thomas, V, Haerry, D, Warner, K, Klingmann, I, et al. EUPATI guidance for patient involvement in medicines research and development: Health technology assessment. Front Med (Lausanne). 2018;5:231.CrossRefGoogle ScholarPubMed
Vanstone, M, Abelson, J, Bidonde, J, Bond, K, Burgess, R, Canfield, C, Schwartz, L, Tripp, L. Ethical challenges related to patient involvement in health technology assessment. Int J Technol Assess Health Care. 2019;35:253–6.CrossRefGoogle ScholarPubMed
MacPhail, E, Shea, B. An inside look at the early history of the CADTH history of the CADTH common drug review in Canada. Ottawa, Canada: Canadian Agency for Drugs and Technology in Health; 2017. p. 67.Google Scholar
CADTH. CADTH 2018–2021 strategic plan. Transforming how we manage health technologies in support of better health, better patient experience, and better value. Ottawa, ON, Canada; 2018. p. 14.Google Scholar
CADTH. Delivering value to Canadians. 2020. Available from: https://www.cadth.ca/about-cadth/what-we-do [accessed 2020 May 26].Google Scholar
Martin, J, Polisena, J, Dendukuri, N, Rhainds, M, Sampietro-Colom, L. Local health technology assessment in Canada: Current state and next steps. Int J Technol Assess Health Care. 2016;32:175–80.CrossRefGoogle ScholarPubMed
Campbell, ML. Institutional ethnography and experience as data. Qual Sociol. 1998;21:55–73.CrossRefGoogle Scholar
Tummons, J. Institutional ethnography, theory, methodology, and research: Some concerns and some comments. Perspectives on and from institutional ethnography, vol. 15. Bingley, UK: Emerald Publishing Limited; 2017. p. 147.CrossRefGoogle Scholar
Campbell, M, Gregor, F. Mapping social relations: A primer in doing institutional ethnography. Toronto, Canada: Garamond Press; 2002.Google Scholar
Devault, ML. Introduction: What is institutional ethnography? Soc Probl. 2006;53:294–8.CrossRefGoogle Scholar
Walby, K. Institutional ethnography and data analysis: Making sense of data dialogues. Int J Soc Res Methodol. 2013;16:141–54.CrossRefGoogle Scholar
Smith, DE. Institutional ethnography. A sociology for people. Lanham, MD: Altamira Press; 2005.Google Scholar
Devault, ML, McCoy, L. Institutional ethnography: Using interviews to investigate ruling relations. In: Gubrium, JF, Holstein, JA, editors. Handbook of interviewing: Context and method. Thousand Oaks, CA: Sage; 2002.Google Scholar
McGinity, R, Salokangas, M. Introduction: ‘embedded research’ as an approach into academia for emerging researchers. Manage Educ. 2014;28:3–5.CrossRefGoogle Scholar
Smith, DE, Turner, S. Incorporating text into institutional ethnographies. Toronto, Canada: University of Toronto Press; 2014.CrossRefGoogle Scholar
Rankin, J. Conducting analysis in institutional ethnography: Guidance and cautions. Int J Qual Methods. 2017;16.1–11.Google Scholar
CADTH Patient Involvement in Scientific Advice. Available from: https://cadth.ca/scientific-advice/patient-involvement [accessed 2017 Apr 22].Google Scholar
Weeks, L, Polisena, J, Scott, AMHoltorf, A-P, Staniszewska, S, Facey, K. Evaluation of patient and public involvement in health technology assessment: A survey of international agencies. Int J Technol Assess Health Care. 2017: 33(6):715–723.CrossRefGoogle ScholarPubMed
Smith, J. Prescription drugs part 1 - common drug review: An F/P/T process house of commons Canada. Ottawa, Canada: Standing Committee on Health; 2007.Google Scholar
Merlin, T, Weston, A, Tooher, R. Extending an evidence hierarchy to include topics other than treatment: Revising the Australian ‘levels of evidence’. BMC Med Res Methodol. 2009;9:34.CrossRefGoogle ScholarPubMed
Fabbri, A, Parker, L, Colombo, C, et al. Industry funding of patient and health consumer organisations: Systematic review with meta-analysis. BMJ. 2020;368:16925.Google ScholarPubMed
Kleme, J, Pohjanoksa-Mäntylä, M, Airaksinen, M, Enlund, H, Kastarinen, H, Peura, P, Hämeen-Anttila, K. Patient perspective in health technology assessment of pharmaceuticals in Finland. Int J Technol Assess Health Care. 2014;30:306–11.CrossRefGoogle ScholarPubMed
Mercer, RE, Chambers, A, Mai, H, McDonald, V, McMahon, C, Chan, KKW. Are we making a difference? A qualitative study of patient engagement at the pan-Canadian oncology drug review: Perspectives of patient groups. Value Health. 2020;23:1157–62.CrossRefGoogle ScholarPubMed
Hofmann, B. Toward a procedure for integrating moral issues in health technology assessment. Int J Technol Assess Health Care. 2005;21:312–18.CrossRefGoogle Scholar
Facey, K, Boivin, A, Gracia, J, Hansen, HP, Lo Scalzo, A, Mossman, J, Single, A. 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
Löblová, O, Trayanov, T, Csanádi, M, Ozierański, P. The emerging social science literature on health technology assessment: A narrative review. Value Health. 2020;23:3–9.CrossRefGoogle ScholarPubMed
Supplementary material: File

Bidonde et al. supplementary material

Table S1

Download Bidonde et al. supplementary material(File)
File 28 KB