🔦 🔍💡 Participatory governance: two patient partners on a hospital steering committee, unanimously deemed useful — but hindered by jargon, restricted access to information and an unclear status. ⚖️ A study that lists the concrete conditions to overcome token participation.#PatientPartnership #HealthDemocracy
📌 This document dissects, with concrete cases to support, what really happens when concerned individuals are brought into a strategic decision-making body — beyond the principle, in the daily frictions: access to information, jargon, ambiguous status, speaking time. It provides a framework of success conditions directly transposable to any participatory governance mechanism (user committees, user councils, steering committees), and directly names the risk of token participation. Useful for equipping, preparing and securing the integration of concerned individuals into a body, without reproducing the blind spots observed here.
Review Healthcare (MDPI, Basel), vol. 14, art. 2021 — published on 7 July 2026 (submitted on 29 May, accepted on 2 July 2026). Open access article (CC BY). DOI: 10.3390/healthcare1413202
📜🔗LINK to the source
1. ANALYTICAL SUMMARY
Elevating experiential expertise to the strategic level.
Since 2015, Québec has been deploying the "Montreal model", which recognises that individuals living with an illness have experiential knowledge that complements professional expertise, to be mobilised at all levels of governance (p. 2). In January 2024, a Montreal university hospital took a step forward by appointing two patient partners (PP) to its management committee, a strategic body that had previously been closed to users (p. 2-3). The study fills a gap in the literature, which is largely focused on boards of directors or quality committees, but is almost silent on the integration of PP at the executive level, where institutional priorities, resource allocation, and confidentiality constraints are decided (p. 2).
An accepted but unfinished innovation, and identified levers.
Based on 20 semi-structured interviews (16 directors, 2 PP, the complaints commissioner, the former CEO) thematically analysed (p. 4), the study establishes that the presence of the PPs is unanimously deemed relevant: it reanchors the deliberations in lived experience, reminds of the institution's mission, and forces the simplification of debates (p. 8-10). However, integration remains partial: roles and objectives are unclear, access to information is restricted by confidentiality, jargon and acronyms abound, meeting formats are not conducive to speaking up, and institutional recognition is incomplete (p. 10-11). The document derives a five-step model and a table of operational recommendations (p. 15-17).
2. KEY POINTS OF THE DOCUMENT
1. Two PPs were integrated into the management committee in January 2024 for renewable one-year mandates; their profiles are deliberately complementary (one in oncology/current treatments, lawyer, 17 projects led at the institution; the other in surgery/episodic follow-up, academic, 4 projects) — the complementarity of profiles is presented as a success factor (Table 3, p. 8).
2. The selection followed a structured process: 14 applications, 3 interviews, 2 selected, based on criteria defined in advance (experience in the institution's committees, ease of expression in a strategic context, professional exposure to strategic issues, availability). The presence of the CEO on the selection committee had strong symbolic value; the absence of a PP representative in this committee is noted as a shortcoming (p. 7-8, Box 2).
3. The lack of clarity regarding roles and objectives is the central barrier: both directors and PP report the absence of an explicit and shared definition, each "reconstructing" individually the meaning of the approach (p. 10, 13). The clarification of roles should be considered as an evolving process, not as a one-off step (p. 13).
4. Confidentiality constitutes a structural tension: despite signed agreements, partial access to information (notably via digital tools) initially limited participation, with a symbolic effect of exclusion ("omission" in mailing lists) that obscures the message of full belonging (p. 10-11, 13). The establishment subsequently lifted some of these restrictions (p. 14).
5. Jargon and acronyms act as an implicit mechanism of exclusion; paradoxically, the clarification questions raised by the PPs have benefited the entire committee, with directors (n = 14) acknowledging that they now find it easier to participate in topics they were not familiar with (p. 9-10, 14).
3. ACTION POINTS FOR LOCAL ACTORS
1. Before any integration, gauge the expectations and fears of the members of the body through a short preliminary questionnaire, like the one administered here to the directors (11 respondents, 68%) — useful for identifying reservations and adapting the preparation (Table 2, p. 6-7).
2. Co-construct, with the concerned individuals and the body, a written and shared definition of roles, objectives, and modalities of participation, and update it over time; the absence of reiteration after the initial session has allowed ambiguity to persist (p. 12-13, Table 4 p. 16).
3. Recruit at least two concerned individuals and organise a pair: the ability to exchange between peers during preparation was explicitly valued, and to plan for a peer-trainer during the training (p. 8, Table 4 p. 16).
4. Provide upon arrival a glossary of acronyms and definitions, shared with the concerned individuals AND the professionals, and designate a mentor-referent (here, the director in charge of the partnership) to translate the implicit before/after the meeting (p. 8-9, 16).
5. Reserve a dedicated slot on the agenda for the contribution of concerned individuals at each session: their input was not systematically solicited, and several directors (n = 8) advocated for formalising this space (p. 11, 13-14).
6. Secure formal and symbolic recognition: written status, mention in the reports and on the institutional website, full technological access, regular dialogue between management/concerned individuals. Necessary adaptation not covered: establish documented follow-up of the actual influence on decisions, absent here and noted as a limitation (p. 14, 17).
4. ADDITIONAL REFERENCES
🔍➕ For more information, see the articles referenced by "Practices in Health" on the theme of participation ➡️🔗 https://www.pratiquesensante.com/participation and participation in care https://pratiquesensante.odoo.com/7-3-particpation-aux-soins-et-formation
1. HAS — Partnership in health and partner patients. Guide and practical sheets (educational guide, adopted in May 2026, published online on 30 June 2026). French reference framework directly complementary: conditions for success at the individual, collective, and environmental levels, alert on token participation, partnership checklist.
🔗 https://www.has-sante.fr/jcms/p_4085651/fr/partenariat-en-sante-et-patients-partenaires (verified, active)
2. Mission report Sciences Po Lyon / Hospices Civils de Lyon — The patient partnership in health in France: state of play (July 2025). Useful for transposing Quebec findings to the French context (institutionalisation, legal framework, terminology), with a perspective on France/Quebec.
🔗 https://www.sciencespo-lyon.fr/wp-content/uploads/2025/07/Rapport-de-mission-PF-10-HCL_compressed.pdf (verified, active)
3. SSA Quebec support unit — Guide to facilitating a plain language validation group (January 2025). Directly addresses the barrier of "jargon/acronyms" identified in the article; operational method for validating plain language documents, with a Quebec context consistent with the study.
🔗 https://ssaquebec.ca/ (verified active portal; resource referenced January 2025)
5. FREQUENTLY ASKED QUESTIONS (FAQ)
1. How many patient partners have been integrated, and under what status?
Two PP, one-year renewable mandates, starting from January 2024; effective participation in meetings since April 2024 (p. 2-3, 5).
2. How were they selected?
Call for applications to PP and the user committee: 14 applications, 3 interviews, 2 selected by a committee including the CEO and the quality director, based on predefined criteria (p. 7-8).
3. Did their presence stifle the directors' voices?
No. No director reports self-censorship or avoidance; the nature of discussions has not changed (p. 9-10).
4. What is the main obstacle encountered?
The ambiguity of roles and objectives, never explicitly defined or shared, each reconstructing them alone (p. 10, 13).
5. Did confidentiality pose a problem?
Yes: despite signed agreements, access to certain documents remained restricted, with symbolic effects of exclusion; the institution has since relaxed access via Teams, while maintaining restrictions on very sensitive documents (p. 10-11, 13-14).
6. What concrete effects on decisions?
Re-anchoring on the patient dimension (e.g.: adoption of a patient risk gradation for financial optimisation measures), reminder of university missions (research, innovation), better collective understanding thanks to the questions from the patients (p. 10). However, the actual influence on decisions could not be traced (p. 14).
7. Does the Santé Québec reform threaten the system?
The majority of directors (n = 13) believe not in principle, but the new security and confidentiality rules constitute constraints, and the management committees have lost independence and name in favour of local governance committees (p. 11, 14).
6. REWRITING IN PLAIN LANGUAGE
What the document says
In Quebec, we want patients to help decide in hospitals.
We think that patients know useful things.
This knowledge comes from their life with the illness.
In January 2024, a hospital did a test.
Two patients joined the committee that makes the big decisions.
Before, this committee was closed to patients.
Researchers wanted to know if it worked.
They spoke with 20 people.
There were the directors and the two patients.
What we learned
Everyone finds the presence of patients useful.
Patients remind us of the real lives of the sick.
They ask simple questions.
These questions also help the directors to understand.
But there have been problems.
The role of patients was not clear.
Patients did not understand all the complicated words.
They could not see all the documents.
They did not always have time to speak.
What needs to be done
The role of patients must be written before starting.
At least two patients must be chosen.
A list of difficult words must be provided.
Time for patients to speak must be given.
Their names must be written in the official documents.
7. CROSS-ANALYSIS — VALUES OF HEALTH PRACTICES
Literacy : The document identifies jargon and acronyms as barriers, and recommends a shared lexicon and clear language practices (p. 10, 14, 16).
Empowerment : Patients contribute to strategic deliberations, but their influence depends on profiles, time, and climate; their power to act remains conditioned by access to information (p. 13).
Participation : The article precisely documents the mechanisms (selection, training, welcome) and points out the absence of a formal slot for speaking (p. 7-11, 13-14).
Community health : The collective dimension is present through the reminder of patient experience in institutional decisions, but integration remains uneven across departments (Box 5, p. 10).
Ethics : The risk of instrumentalisation of the PP (taking on difficult decisions) is explicitly discussed, inviting vigilance (p. 13).
Human rights : The approach mobilises WHO frameworks of good governance (equity, transparency, accountability) and the principle of mutual recognition of knowledge (p. 3-4).
Intersectorality : The initiative associates the hospital quality service and an external expert organisation (CEPPP), an articulation recommended for other establishments (p. 3, 5, 16).
Partnership : A formalised model in five steps is proposed, from the facilitating context to sustainability (Figure 1 p. 12, Table 4 p. 15-17).
Combating discrimination : The document addresses symbolic exclusion (absence of names, mailing lists) and the risk of tokenism, but does not address discrimination related to protected characteristics; non-judgment is not thematised directly (p. 11, 14).
8. EVALUATION OF THE RELIABILITY OF THE RESOURCE
Scientific relevance — high. Rigorous qualitative study: triple theoretical framework (Montreal model, OECD, WHO), explicit method (thematic analysis by Braun & Clarke, QDA Miner software), reporting guided by SRQR standards, participation rate of 100% (20/20), and cross-referencing of director/PP perspectives. Current and solid references.
Gender and scope limitations to report. This is a monosite case study, on a very recent integration and in a context of double transformation (budgetary restructuring + Health Reform Quebec) — generalisation must be cautious. The authors acknowledge this: absence of direct observation of meetings, no documentary analysis of sessions or quantitative indicators (number of interventions per PP), due to lack of access authorisation (p. 15). Probable social desirability bias : several co-authors supported the implementation of the innovation they are evaluating, which the reflexivity statement explicitly assumes, highlighting that an external co-researcher participated in the analysis to limit this bias (p. 15).
Operational relevance — high. Table 4 and the five-step model are directly applicable; the results translate into concrete and transferable recommendations.