How we evaluated a multi-year patient-focused research program
For many years, the Ontario Neurotrauma Foundation (ONF) and Praxis Spinal Cord Institute, with the support of the Government of Ontario, have partnered to fund patient-centred research to improve the health of people with SCI in Ontario and beyond. In 2019, Cathexis began working with ONF and Praxis to evaluate their collaborative SCI Initiative.
Between 2017–20, the ONF-Praxis partnership granted over $6 million to help fund 21 projects led by Ontario researchers.
Using a participatory evaluation approach, we assessed program outcomes and implementation – in particular, the ways that people with lived experience, clinicians, researchers, and other stakeholders were intentionally and actively engaged in the funding program and across the projects. Patient engagement was a critical component of this funding program: each of the projects was required to have significant participation from people with lived experience of SCI.
An evaluation advisory committee, with broad representation from researchers, clinicians, people with lived experience of SCI, and Praxis and ONF staff, ensured that the right stakeholders were involved at the right moments throughout our evaluation. The committee provided invaluable guidance to the Cathexis team while planning and designing the data collection tools. We also had the participation of Spinal Cord Injury Ontario which connected us with its membership at key points in the evaluation, including for surveys and case studies with people with SCI who participated in the funded projects.
The evaluation advisory committee also took part in “data parties” following each major data collection phase, which contributed to the interpretation of findings. This helped ensure that the analysis and interpretation aligned with the experiences of key SCI stakeholders. At each of these interpretation sessions we presented a technical report of evaluation data and explored:
- To what extent did the findings confirm what the advisory committee already knew?
- Were any findings surprising?
- Did any findings raise additional questions?
- Which findings were most important to members of the advisory committee?
- Which findings were most actionable?
Taking this approach helped us identify the most salient findings and build capacity to utilize evaluation findings among the project partners.
Read our executive summary of the evaluation here: https://onf.org/wp-content/uploads/2020/11/Evaluation-of-the-Ontario-SCI-Initiative_Exec-Summary-June-2020.pdf
We extend our sincere thanks to everyone who contributed to the evaluation and helped make it a success.