The project to create a SPOR support unit in Quebec emerged through an initiative of the Canadian Institutes of Health Research (CIHR). SPOR (Strategy for Patient-oriented Research) stems from a priority introduced in the CIHR’s IPPH 2009–2014 Strategic Plan. This strategy was the result of a broad consultation conducted with governments, patients, individuals and organizations working in research and health and social services, including decision-makers, academic institutions, charities and the private sector.
Recognition, Promotion and Development
Our mandate has driven a number of developments and choices:
- Recognizing the first-hand knowledge of patients, the public and all other concerned parties
- Promoting research in real world contexts
- Developing implementation science
- Adopting the learning health system concept (LHS)
Fulfilling Our Ambitions
POR gives us the means to achieve our ambitions by making it possible to establish a LHS.
This vision pushes us to embrace the quintuple aim and mobilize researchers and health and social services, with and for the benefit of the public, in an effort to improve:
- Patient experience and outcomes
- The health of the general population
- The efficiency of the system
- The well-being of health and social service workers
- The equity in health and social services
Eleven units have been created (Alberta, British Columbia, Manitoba, the Maritimes, Nunavut, Ontario, Quebec, Saskatchewan, Northwest Territories, Newfoundland and Labrador, and Yukon).
Dr. Marie-Dominique Beaulieu was the Unit’s first Scientific Director from 2014 to 2017. She was also the general director for two years.
The Unit received funding and built its team and service proposal with its partners the MSSS, the FRQ, the RUISSS, McGill University, Université de Montréal, Université Laval and Université de Sherbrooke. It created its first cohort of grant recipients in partnership with the Fonds de recherche du Québec – Santé (FRQS). Eleven people received support.
The Unit began to take shape. An agreement between the institutions was signed (the four universities with a faculty of medicine) and a governing framework was adopted.
A target grant competition program was developed in collaboration with the FRQ and the RUISSS.
Ginette Bélec was named general director. Subsequently:
- The Unit launched a demonstration project for a learning health system
- Acfas organized a conference on patient-oriented research titled Conditions d’exercice et de réussite de la recherche axée sur le patient
- A joint working committee on the use of clinical data from electronic medical records was established in partnership with the INESSS.
- The RSIJ competition, Aire ouverte, was launched in partnership with the MSSS and FRQS.
- A targeted community care program was launched in partnership with the MSSS and FRQS.
- Unit symposium on access to data
The Unit hired an outside firm to carry out a mid-term assessment. Changes were also made at the management level:
- Dr. Alain Vanasse was appointed as the designated head researcher, taking over as scientific director
- Mathieu Trépanier (in memoriam) was named general director
- Joe Guillaume Pelletier was named general director
- Creation of CPPCP-RSQ (Communauté de pratique des patientes, patients, citoyennes et citoyens en recherche du Québec)
- Launch of the Priorité patient competition in partnership with Oncopole
- Final assessment by an outside firm
- Extension of Phase 1 granted
In 2020, Université de Sherbrooke became the Unit trustee. The executive team moved to the Université de Sherbrooke’s Longueuil campus.
- New professionals joined the executive team (project management, communications and finance)
- New areas of expertise in LHS. See areas of expertise
Dr. Antoine Groulx was appointed as the designated scientific director and transitioned into the role alongside Dr. Alain Vanasse. Over the following months, the Unit took on a number of key files:
- Second extension of Phase 1
- Submission of a renewal proposal to the CIHR
- COVID-19 pandemic: adjustment of the service proposal
- Name change: Unité de soutien SRAP du Québec becomes the Unité de soutien SSA Québec
In late 2021 and early 2022, the Unit holds two major events:
- The seminar « Accès aux données : transparence et consentement numérique » on October 28, 2021.
- At the conclusion of the event, the Unit issues six recommendations to evolve access to health and human services data in the province. His approach is part of a drive to empower individuals to understand and make informed, modern choices about the scope and use of their data as early as 2022.
- The symposium « Building Quebec’s learning health system together » on March 24, 2022.
- The population and key members of Quebec’s health and social services network are at the same event to build the future. This gathering is an opportunity to initiate a real shift towards partnership and continuous improvement of our health system. The event is available online.
In 2022, the Unité de soutien SSA Québec, with the expertise of the firm Léger, is administering a survey designed to question the Québec population regarding the improvement of the health system and the sharing of their medical information.
- The results indicate that Quebecers want to be part of the solution, trust the science, value the well-being of the network’s human resources and support digital consent.