Phase II Pillar Updates
Patient-oriented research received a resounding stamp of approval with the announcement of more than $68 million over 5 years last fall from the Government of Canada, the Government of Ontario and provincial partners to support Phase II of OSSU’s work. The four pillars of OSSU’s patient engagement work provide updates on the learning health system, data platforms, training and capacity building, and patient partnership.
The ‘Learning health system’ working group has collaboratively developed a set of visuals to ground its members work, as well as the broader work of OSSU, in a shared understanding about what is a learning health system. This includes the ‘levels’ where learning and improvement can take place, the steps in learning and improvement cycles, how different forms of evidence can contribute to these steps, and how embedded researchers and evidence-support units can support these steps.
The working group organized a presentation about its work at OSSU’s research day, which gave the group opportunity to ‘walk the talk’ of partnership among health-system leaders, patient partners, and researchers by having representatives from each group speak about their shared understandings and experiences with contributing to a learning health system. The working group meets monthly, and has expanded to include key leaders from CIHR. Members continue to leverage their respective initiatives (RISE, HSPN and others) to operationalize these learning health system ideas to support ongoing development of Ontario Health Teams, the work of SPOR chronic disease entities, as well as many other health-system initiatives in Ontario.
The working group also contributes to the national learning health system community of practice through two of its members, John Lavis (who chairs the national community) and Hilary Edelstein from OSSU.
Since the start of Phase II, the OSSU Data Platform continues to expand and support researchers with the conduct of patient-oriented research in Ontario’s learning health system. Access to Ontario’s rich health administrative data continues to grow through ICES Data and Analytic Services (DAS) which recently surpassed supporting over 1000 research data requests since its inception in Phase I of SPOR. Already in Phase II, several new, significant and highly relevant Ontario health data assets have been linked to the ICES data repository and made available to researchers. These include data on COVID-19 testing (enhanced OLIS), vaccinations (COVAXON), and case and contact management (CCM).
As part of the Ontario Health Data Platform (OHDP), researchers have access to these data and new tools and resources (e.g., R-studio, python, Anaconda Cloud) in a high-performance computing environment at ICES. In collaboration with Health Data Research Network and several National registries and data repositories (e.g., Canadian Longitudinal Study on Aging – CLSA, CanPath), the OSSU Data Platform and ICES are enabling multi-regional research projects incorporating Ontario data.
The Training and Capacity Development Initiative/Pillar of OSSU has been building on 8 priorities identified by a stakeholder event early in Phase 2. First, the Initiative leadership committee has expanded and diversified. Second, the Compendium of Training and Capacity Development Programs in Ontario is being transformed into a precursor for action, identifying programs for particular audiences (patients, early career researchers etc). Third, using the lens of the learning health system, exemplar programs are being identified which engage patients in research and care-improvement simultaneously, promoting integration of patient engagement and efficient use of patient engagement resources. The exemplar programs will be identified, celebrated and emulated.
OSSU’s Patient Partner Working Group (PPWG) has already made great strides to working towards the goals of OSSU Phase II and is looking forward to a busy 2023. It now has a diverse group of 15 members with recent onboarding of patient partners from Northern Ontario and the Franco-Ontarian community. Members are embedded in OSSU, serving on the Board of Directors, and provide patient and caregiver perspectives to OSSU Research Centres and initiatives. The PPWG has its own task groups for special projects.
In 2022, the group co-developed a PPWG Patient Partner Compensation Policy/Guideline, served as EMPOWER and AMS reviewers, hosted two successful webinars, co-led a research query on anti-racism, and improved the website. Spoiler alert for 2023: research ethics resources, patient-researcher matching platform, and an equity, diversion and inclusion-themed webinar are underway. Most importantly, the group benefitted tremendously from each others’ expertise and their shared commitment to advancing patient partnered research in Ontario.