The Ministry of Health in Québec requested the National Institute of Excellence in Health and Social Services to produce clinical and implementation recommendations for the prophylaxis, diagnosis, and treatment of Lyme disease.

(i) Describe the process of trialing different modalities of patient engagement as a means to integrate a diversity of patient perspectives and (ii) Describe the learning process of INESSS regarding the integration of the patient perspective.

All documents were analyzed, and a survey with all advisory committee members and semi-structured interviews with stakeholders were conducted. Each interview was transcribed verbatim and imported into QDA miner software for the purposes of analysis. Data analysis was carried out concurrently with data collection to allow for an iterative approach between data collection and analysis.

Five methods to integrate the perspectives of patients were used: (i) interviews with patients, (ii) inclusion of patient partners within the advisory committee, (iii) literature review, (iv) focus groups with one patient association, and (v) feedback from patient associations on recommendations intended for decision makers and other targeted stakeholders. The patient partners influenced decisions by sharing their experiential knowledge. The patient interviews and the literature review added an in-depth perspective on the disease and experience with the healthcare system. The patient association members shared their perspectives and helped disseminate the recommendation to sustain a practice change.

The combination of methods to collect and integrate patients’ knowledge and patient associations’ perspectives helped develop a comprehensive understanding of a controversial object of evaluation.

Increasing emphasis is given on involving patients in health technology assessment (HTA). While this is mainly done at the level of regional and national HTA agencies, this tendency is also emerging in local HTA units. In this study, we provide the results of a survey conducted in local HTA units in the province of Quebec, Canada. The aim of the survey was to provide an overview of local HTA unit practices to involve patients, users, caregivers, and citizens in their process, their interest in doing so, and their information needs for this.

The survey was conducted in 2017 with a response rate of eleven units over a possibility of twelve.

Three units out of eleven (27.3 percent) never involved patients or members of the public in their processes and all indicated that they will involve them in the next few years. The three most important needs for support identified in the HTA units were in: recruiting and selecting patients; integrating experiential knowledge; and knowing and implementing the best methods and practices for partnership.

Patient involvement in local HTA units is quickly evolving and that is why they urgently need tools to involve more effectively patients and members of the public in their process.

In a context of rapidly evolving technologies and growing evaluative challenges, the National Institute of Excellence in Health and Social Services (INESSS) is developing an institutional ethical framework making explicit and transparent the guiding principles and new modalities of process for health technology assessment for public coverage.

This framework is co-built by the INESSS experts - drugs, social services, technology and health services and cross-cutting methodologies - through literature and practice reviews as well as a consultative process on key topics with external collaborators.

The development process aims to: (i) identify the principles applicable to all the objects evaluated, (ii) define the evaluation strategies used to appropriately address evaluation challenges in the clinical, organizational, economic and societal dimensions, (iii) equip the scientific teams to successfully integrate diversified knowledge from the literature, stakeholders participation and medico-administrative data banks, and (iv) facilitate deliberation leading to evidence-informed recommendations. It is envisioned as a fully integrated process rooted in a reflexive multi-criteria approach supporting fair and reasonable decision. The presentation will focus on one of the key aspects of this framework, i.e., the development of principles for stakeholder participation based on a recent INESSS methodological forum on the topic, and the agile deployment of innovative processes and tools in various projects, including the patient partnership developed with a pioneering academic centre.

This framework provides explicit, transparent and cross-cutting processes and a framework for continuous improvement. The goal is to promote stakeholder engagement and enable increasingly complex arbitration aimed at equity and social justice, in a context of rising costs and uncertainty, and focused on the creation of value for our fellow citizens.

Health technology assessment (HTA) and the development of clinical practice guidelines (CPGs) support important health policy and clinical decisions. Conflicts of interest (COI) and conflicts of commitment (COC) can undermine the credibility and integrity of these processes, that of the actors involved, and, more alarmingly, the health of the population. Thus, management of COI and COC is critical. Although COI among experts participating in HTA and CPG development are increasingly discussed and managed, little is said about COCs and the possible COI and COC associated with patient participation. The aim of our study, which is part of the Institut national d'excellence en santé et services sociaux (INESSS) continuing improvement process for COI and COC management, was to identify best practices in this matter.

We examined the COI and COC management policies of ten HTA and CPG organizations and performed a review of the relevant academic literature.

Three HTA and CPG organizations had norms regarding the management of patients’ COI and COC, whether they were representatives of patient associations or not. These norms addressed situations such as: when a patient represents a patients’ association; when a patients’ association or an individual patient has important (financial) ties with the pharmaceutical industry; or when an expert or one of his/her family members suffers from the disease related to the HTA or CPG. The declaration of a COI or COC should not necessarily lead to the individual's exclusion from the entire HTA or CPG development process, but it must lead to some evaluation and management. Patients appointed to share their perspectives are not considered to have COI or COC if their mandate is explicit.

The COI and COC of all participants in HTA and CPG development should be managed fairly and transparently. Therefore, the management of COI and COC among patients participating in HTA or CPG development should be based on the same principles as those applied to clinical experts.

Decision-making about replacement or modification of an implantable cardioverter defibrillator (ICD) must be patient-centered and clinically appropriate. We engaged both patients and health care professionals in a multi-method approach in order to recommend structures and processes that facilitate informed and shared decision-making.

A systematic literature review (2000 to 2017) was performed focusing on the patient's perspective and the optimal organization of structures and processes for decision-making. A province-wide field evaluation based on medical chart review was carried out to provide ‘real world’ evidence in Québec's six ICD implanting centers (1 July to 31 December, 2016; N = 418). Patients and health care professionals reviewed the findings of the review and field evaluation, and deliberated recommendations in an anonymous manner by electronic mail. A joint meeting focused on proposed recommendations concerning shared decision-making.

The patients provided feedback on the literature review based on their ICD experience, and highlighted the need for better and more interactive decision aids, clinical information and time, and a private space for sensitive discussions. The field evaluation underlined the variability of treatment choices at the time of replacement and that more than one in ten patients had undergone ICD deactivation. Proposed recommendations focus on multi-disciplinary, integrated follow-up of patients and outline best practice for incorporating patient wishes and life objectives when discussing treatment options. The multi-round consultation process allowed both patients and professionals to co-construct recommendations with our evaluation team.

This multi-method approach enriched our interpretation of literature and ‘real world’ data and facilitated identification and prioritization of important themes. Partnership with both patients and clinicians added a new and energizing dynamic to our evaluation and recommendation processes. We acknowledge the contribution of the members of the patient committee and the clinical experts committee.