The RQSPAL includes 6 common resources that will be developed or enhanced (some are already in operation) and offered to members. These resources will adhere to the guidelines of sustainable health, open science, EDI (equity, diversity, and inclusion), and social acceptability concerning the use of health data and personal information within a learning health system vision.
1- Quebec Data Bank on PEOLC
A committee formed by two FRQS thematic networks, the RQSPAL and the Digital Health Network (RSN), along with other actors from the digital research ecosystem (e.g., Pulsar, Calcul Quebec, etc.), will determine the components of a future data bank on palliative and end-of-life care (PEOLC).
Impact. This data bank, guided by the FAIR principle (Findable, Accessible, Interoperable, Reusable), will serve as a rich repository of prospective quantitative and qualitative data and will also allow for the merging of certain data sets from research projects on related themes or with comparable groups in a sustainable vision. It addresses a gap identified by our members and numerous governmental, public, and semi-governmental organizations by generating high-quality data.
Importance. The absence of such a resource hinders researchers’ ability to conduct studies, develop new knowledge, and evaluate current clinical practices. The Framework on Palliative Care in Canada states that evidence-based data banks should develop around the non-medical aspects of PEOLC, incorporating the interdisciplinary and holistic approach advocated by PEOLC, while also valuing the inclusion of qualitative data as much as quantitative data. Existing local data banks have limited scope, are restricted to short periods, and do not allow for complementary, longitudinal, or population-based secondary analyses.
2- National Observatory on Palliative and End-of-Life Care (OFV)
The RQSPAL is involved in the design and implementation of the OFV by facilitating the collaboration between the Ministry of Health and Social Services (MSSS), researchers, and actors in the PEOLC ecosystem. This resource is part of the 2020-2025 Action Plan for equitable access to quality palliative and end-of-life care (priority 9). The development of the OFV is a co-construction between various partners emphasizing the importance of research and data on access, equity, and quality of PEOLC in Quebec.
Impact. The OFV aims to support user decision-making to improve clinical and organizational practices in PEOLC in Quebec.
Importance. Improving data access will facilitate the conduct of studies, knowledge synthesis, and practice evaluation, and contribute to establishing new quality standards for care.
3- Minimal Clinical Data Set (MCDS) for PEOLC
The MCDS aims to identify the clinical data that should minimally be collected systematically and standardized in practice, adapted to the Quebec context. The development of this tool involves several phases. Phases 1 (scoping review, completed) and 2 (expert committee and partners to create the MCDS, ongoing) will be followed by phase 3, its implementation in different settings (hospitals, home, long-term care facilities, etc.) and different clienteles (adults, pediatrics).
Impact: Including the MCDS in these settings will enable larger-scale comparisons and enhance research capacity through standardized available data. The RQSPAL will guide its use among partners. For clinical practice, standardized evaluation methods will lead to better detection of symptoms that can affect the quality of life of people with life-limiting diagnoses and better symptom management in various contexts. It will also provide in vivo indicators of the quality of care in different clinical settings providing palliative care.
Importance: There is no standardized evaluation concerning the symptoms and physical, psychological, and social needs influenced by the quality of care required in PEOLC in both clinical practice and research. This platform will improve research capacity while enhancing scientific rigor and quality of care through its standardization.
4- Partnership Research Platform
In collaboration with the Learning Health System (LHS), this platform lists individuals with experiential knowledge interested in participating in PEOLC research as partners. Already existing on REDCAP, we will enhance this platform by including underrepresented experiential knowledge in PEOLC, including representatives from community organizations, and offering support services to our members to develop partnership research. Registered individuals are guided by the SSA Support Unit on the available support and training to assume their roles.
Impact: Our members will have potential co-creation partners and will be supported in developing their knowledge and skills in partnership research.
Importance: Placing the person and their loved ones at the heart of care (holistic approach) aligns with the patient-partner approach. The person thus collaborates in a co-construction approach, acts as an expert and collaborator for research teams, and can participate in various phases of a research project, from conception to publication of results. Originating from participatory research, the partnership approach in research recognizes the expertise and knowledge gained from the person’s experience as experiential knowledge.
Do you want to register for the Research Partner Registry? Click here for more information (only in French).
5- FORCE Platform
The FORCE platform stands for Promoting, Optimizing Research by Gathering Expertise. Its purpose is to catalog, via the REDCAP platform, the activities, scientific disciplines, fields, and research themes of all our regular members and to facilitate contact with other actors involved in PEOLC in Quebec. Already existing, the next development phase of this platform will include adding partner members to this profile and linking our regular members with field actors inside and outside Quebec.
Impact: It provides a profile of research by identifying the expertise and research themes of our members. It fosters collaborations and partnerships among members, health and social service network actors, community members, decision-makers, and journalists. Ultimately, the platform will support the realization of complete integrated knowledge transfer cycles to maximize the social impact of our members’ work.
Importance: Updated annually, this platform will provide an evolving perspective on PEOLC research and accelerate its outcomes through increased connections and exchanges between researchers, professionals, and citizens.
6- TaMÉTHO Platform
The Talents, Transversal Skills, and Methodological Optimization in Research (TaMÉTHO) platform will include a directory of talents (student members) listing their availability, expertise, and interest in participating and working in research projects. Additionally, TaMÉTHO will develop a series of training sessions tailored to our members (e.g., intersectorality, innovative research methods adapted to PEOLC, sustainable health, EDI in collaboration with the EDI committee of axis 3, open science) and make accessible the various training and workshops developed by members. Finally, the platform will make available the Research Tool Library (e.g., recruitment techniques, methodological approaches, data collection adapted to vulnerable populations and the reality of PEOLC, tool and measurement instrument bank).
Impact: It serves as a mechanism for acquiring complementary experiences for student members and meets the needs of regular members to engage qualified personnel for specific research tasks requiring specialized knowledge and skills. It facilitates the acquisition of transversal skills for all members. Finally, TaMÉTHO will enable higher-quality research and provide access to resources adapted to the PEOLC context.
Importance: This platform maximizes research capacity and the existing skills within the network, engages talents, and contributes to their complementary training.