Hostname: page-component-586b7cd67f-2brh9 Total loading time: 0 Render date: 2024-11-21T19:20:15.257Z Has data issue: false hasContentIssue false

Developing an agency's position with respect to patient involvement in health technology assessment: the importance of the organizational culture

Published online by Cambridge University Press:  02 October 2020

Irina Cleemput*
Affiliation:
Belgian Health Care Knowledge Centre (KCE), Belgium
Marie Dauvrin
Affiliation:
Belgian Health Care Knowledge Centre (KCE), Belgium
Laurence Kohn
Affiliation:
Belgian Health Care Knowledge Centre (KCE), Belgium
Patriek Mistiaen
Affiliation:
Belgian Health Care Knowledge Centre (KCE), Belgium
Wendy Christiaens
Affiliation:
Belgian Health Care Knowledge Centre (KCE), Belgium
Christian Léonard
Affiliation:
Sciensano, Belgium
*
Author for correspondence: Irina Cleemput, E-mail: [email protected]

Abstract

The Belgian Health Care Knowledge Centre (KCE) formally involves stakeholders in HTA since 2012. Patients are treated as one stakeholder amongst others, but it is recognized that patient involvement (PI) requires a different approach. The success of implementing PI depends, however, on the organizational culture toward PI.

Objectives

The objective of this study was to map the PI culture at KCE in the context of the development of organization-wide supported position statements about PI.

Methods

A nominal group technique was used to measure the PI culture at KCE. Arguments for and against PI and conditions for PI in different phases of the HTA process were collected. A literature review and interviews fed the draft position statements, for which support was assessed by means of a two-round Delphi process.

Results

Arguments in favor of PI in HTA related to the relevance of the scope, expertise with data collection, bringing in fresh ideas for study design, access to survey participants, validation of data analyses, adherence to recommendations. Disadvantages and risks included the lack of scientific knowledge of involved patients, resources requirements, conflicts of interest, and heterogeneity within patient populations. Conditions for meaningful PI referred to measures mitigating the identified disadvantages. Eighteen position statements supported by KCE could be formulated.

Conclusion

The KCE culture seems predominantly positive toward PI, although attitudes vary between HTA researchers. KCE recognizes the potential value of PI in HTA, but considers the level of involvement to be contingent on the topic and phase in the HTA process.

Type
Assessment
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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

Health Information and Quality Authority (HIQA) [Internet] Guidelines for Stakeholder Engagement in Health Technology Assessment in Ireland. 2014 [cited 2020 March 17]. Available from: https://www.hiqa.ie/sites/default/files/2017-01/HTA-Guidelines-Stakeholder-Engagement.pdfGoogle Scholar
Berglas, S, Jutai, L, MacKean, G, Weeks, L. Patients’ perspectives can be integrated in health technology assessments: An exploratory analysis of CADTH Common Drug Review. Res Involv Engagem. 2016;2:21.CrossRefGoogle ScholarPubMed
National Institute for Health and Care Excellence (NICE) [Internet]. Patient and public involvement policy. 2018 [Cited 2020 March 17]. Available from: https://www.nice.org.uk/about/nice-communities/nice-and-the-public/public-involvement/public-involvement-programme/patient-public-involvement-policyGoogle Scholar
Gemainsamer Bundesauusschus (G-BA) [Internet]. Stabsstelle Patientenbeteiligung. 2020 [Cited 2020 March 17]. Available from: https://patientenvertretung.g-ba.de/en/Google Scholar
European Network for Health Technology Assessment (EUnetHTA) [Internet] Patient Input in Relative Effectiveness Assessments. 2019 [cited 2020 March 17]. Available from: https://eunethta.eu/wp-content/uploads/2019/06/Final_290519_Patient-Input-in-REAs.pdfGoogle Scholar
Toledo-Chávarri, A, Perestelo-Pérez, L, Álvarez-Pérez, Y, Abt-Sacks, A, Santoro Domingo, P, Villalón, D et al. Participación de los pacientes en la Evaluación de Tecnologías Sanitarias: manual metodológico. Informes de Evaluación de Tecnologías Sanitarias: Ministerio de Sanidad, Servicios Sociales e Igualdad. Servicio de Evaluación del Servicio Canario de la Salud; 2016.Google Scholar
Renedo, A, Marston, CA, Spyridonidis, D, Barlow, J. Patient and public involvement in healthcare quality improvement: How organizations can help patients and professionals to collaborate. Public Manage Rev. 2015;17:17-34.CrossRefGoogle Scholar
INVOLVE [Internet]. What is public involvement in research? 2020 [Cited 2020 March 17]. Available from: https://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research-2/Google Scholar
Hughes, M, Duffy, C. Public involvement in health and social sciences research: A concept analysis. Health Expect. 2018;21:11831190.CrossRefGoogle ScholarPubMed
Cleemput, I, Dauvrin, M, Kohn, L, Mistiaen, P, Christiaens, W, Léonard, C. Position of KCE on patient involvement in health care policy research. KCE Reports 320. Brussels: Belgian Health Care Knowledge Centre (KCE); 2019.Google Scholar
National Institute for Health Research (NIHR) [Internet]. Patient and public involvement in health and social care research: A handbook for researchers. 2015 [Cited 2020 March 17]. Available from: https://www.rds-yh.nihr.ac.uk/wp-content/uploads/2015/01/RDS_PPI-Handbook_2014-v8-FINAL-11.pdfGoogle Scholar
INVOLVE [Internet]. Briefing notes for researchers: involving the public in NHS, public health and social care research. 2012 [Cited 2020 March 17]. Available from: http://www.invo.org.uk/wp-content/uploads/2012/04/INVOLVEBriefingNotesApr2012.pdfGoogle Scholar