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Review
. 2023 Aug 8;39(1):e51.
doi: 10.1017/S0266462323000417.

Patient and citizen participation at the organizational level in health technology assessment: an exploratory study in five jurisdictions

Hervé Nabarette  1 , Marie-Hélène Chastenay  2 , Jean-Claude K Dupont  3 , Isabelle Ganache  2 , Ann N V Single  4
Affiliations
Review

Patient and citizen participation at the organizational level in health technology assessment: an exploratory study in five jurisdictions

Hervé Nabarette et al. Int J Technol Assess Health Care. .

Abstract

Objective: While patient participation in individual health technology assessments (HTAs) has been frequently described in the literature, patient and citizen participation at the organizational level is less described and may be less understood and practiced in HTA bodies. We aimed to better understand its use by describing current practice.

Method: To elicit descriptive case studies and insights we conducted semi-structured interviews and open-ended questionnaires with HTA body staff and patients and citizens participating at the organizational level in Belgium, France, Quebec, Scotland, and Wales.

Results: We identified examples of organizational participation in managerial aspects: governance, defining patient involvement processes, evaluation processes and methods, and capacity building. Mechanisms included consultation, collaboration, and membership of standing (permanent) groups. These were sometimes combined. Participants were usually from umbrella patient organizations and patient associations, as well as individual patients and citizens.

Discussion: Although the concept, participation at the organizational level, is not well-established, we observed a trend toward growth in each jurisdiction. Some goals were shared for this participation, but HTA bodies focused more on instrumental goals, especially improving participation in HTAs, while patients and citizens were more likely to offer democratic and developmental goals beyond improving participation processes.

Conclusion: Our findings provide rationales for organizational-level participation from the perspectives of HTA bodies and patients. The case studies provide insights into how to involve participants and who may be seen as legitimate participants. These findings may be useful to HTA bodies, the patient sector, and communities when devising an organizational-level participation framework.

Keywords: case studies; health; organizational; organizational policy; patient participation; public participation; technology assessment.

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Conflict of interest statement

H.N. reports being employed by the AFM Telethon patient association, being involved in collaborations between the HAS and patient associations, and having previously worked for the HAS in France. M.-H.C. reports being an employee of the Institut national d’excellence en santé et en services sociaux (INESSS) and not being involved in patient and public involvement at INESSS. J.-C.K.D. reports being an employee at the legal department, Ethics Unit, of Institut Pasteur Paris, having been a member of a standing committee at the HAS until July 2021, and not being involved in patient and public involvement at HAS. I.G. reports being the director of the Bureau – Méthodologies et éthique (Methodologies and ethics) of the Institut national d’excellence en santé et en services sociaux (INESSS). This Bureau is responsible for the methodological activities related to patient and public participation at INESSS. A.N.V.S. reports interests from Springer Nature, personal fees from Patient Voice Initiative which receives multi-pharma sponsorship, and is an active member, Chair, of Health Technology Assessment International’s Patient and Citizen Involvement in HTA Interest Group. She also reports undertaking consultancy work in this field for government and industry.

Figures

Figure 1.
Figure 1.
Organizational level in health technology assessment Patient participation at the organizational level: boxes with solid lines, managerial, and operational aspects (managerial: definition of rules, processes, strategic direction, and decisions; operational: organization linked to one or several assessments). Patient participation in an individual assessment: box with hatched lines.
See this image and copyright information in PMC

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