Affiliation:
1. Research Centre of the University of Montreal Hospital Centre Montréal Québec Canada
2. Centre d'excellence sur le partenariat avec les patients et le public Montréal Québec Canada
3. Department of Health Policy, Management and Evaluation, School of Public Health University of Montréal Montréal Québec Canada
4. Institut national d'excellence en santé et services sociaux (INESSS) Montréal Québec Canada
Abstract
AbstractIntroductionWith the purpose of supporting scientific professionals and helping them to better integrate the expertise of users in their work, a users' and relatives' panel (URP) was set up at the National Institute for Excellence in Health and Social Services in Quebec (INESSS), Canada for the social services and mental health directorate. URPs are advisory structures that mobilise the experiential knowledge of people affected by various issues.ObjectivesThe objective of this study is to assess from a diverse stakeholders' perceptions: (1) the experience of developing and implementing the URP within the context of an Agencies for Health Technology Assessment and Assessment of Social Services (AHTAASS), (2) the contribution of such a URP, (3) the challenges encountered and (4) the perspectives of improvement for the following years.MethodologyWe conducted a qualitative descriptive evaluation study. Nineteen interviews were conducted: six with URP members and 13 with staff representatives. The documents related to the creation of the panel, the URP minutes summarising the discussions and the reports published during that period were collected and analysed. Following a preliminary round of data analysis, a debriefing meeting was conducted with a few participants to validate the results.ResultsThe panel was set up as part of the INESSS' desire to better integrate experiential knowledge into its recommendations. Twelve projects were presented to the panel on various themes. The URP enabled health professionals to consider dimensions they had not identified, to better integrate the experiential data collected from users into their work and to develop recommendations that made more sense to users. Panel members and INESSS professionals learned to work together, moving the working methods from consultation to collaboration and even coconstruction. Based on the panel's significant contribution, the INESSS decided to maintain it and to strengthen its place in its system to better integrate the experiential knowledge of users into its work.ConclusionThis research illustrates how AHTAASS can set up a URP composed exclusively of users, and how it can contribute and be evaluated. It shows that URPs are structures that value the sharing of experiential knowledge of its members, humanise decision‐making and give meaning to the work done by scientific professionals.Patient or Public ContributionOne patient–researcher has contributed to the preparation and writing of this manuscript.
Subject
Public Health, Environmental and Occupational Health
Reference38 articles.
1. Introducing patients' and the public's perspectives to health technology assessment: A systematic review of international experiences
2. Québec Government. Act Respecting the Institut National d'excellence En Santé et En Services Sociaux. Chapter I‐13.03.2023. Accessed June 27 2023.https://www.legisquebec.gouv.qc.ca/en/document/cs/i-13.03
3. Patient and Citizen Participation in the Identification of Ethical Considerations Aiming to Address Uncertainty in the Evaluation of Promising Interventions in a Pandemic Context
4. Ministère de la santé et des services sociaux Ministère de la santé et des services sociaux Direction des communications. Cadre de référence de l'approche de partenariat entre les usagers leurs proches et les acteurs en santé et en services sociaux.2018. Accessed November 12 2021.http://collections.banq.qc.ca/ark:/52327/3452391
5. Developing recommendations for the diagnosis and treatment of Lyme disease: the role of the patient's perspective in a controversial environment