New resources for patient partnership work
As Lead of OSSU’s research initiative, the Public and Patient Engagement Collaborative (PPEC) and a professor in the Department of Health Research Methods, Evidence and Impact at McMaster University, Dr, Julia Abelson has been a driving force in supporting high-quality public and patient engagement in research, policy and health systems.
Dr. Abelson was a PhD student in the 1990s studying public engagement at a time when Ontario was undergoing significant health system reform.
“I often tell people that I was doing this work at a time when there was much less interest than there is now,” says Dr. Abelson. “Other countries were experimenting with novel ways of involving individuals and communities which looked promising. I became interested in trying innovative approaches to address the limitations of the conventional methods that were being used at the time.”
The timing was fortuitous and her early work inspired her contributions to a growing field, focusing on the design, implementation and evaluation of engagement efforts that bring the values and experiences of people more directly into the health system transformation process.
“If you think about the broader public – including patients, taxpayers, community members and others – we are all shareholders in our publicly financed health system so there’s an obligation to engage with individuals and communities about what is happening in our health system and to provide accessible, inclusive opportunities for them to contribute to its improvement.”
Dr. Abelson’s work has a particular focus on “bringing conceptual clarity to how we think about the ‘who’ ‘what’ ‘why’ and ‘how’ of public and patient engagement, and how we link these concepts to practice.
“My role with OSSU is to support researchers to do rigorous and respectful work in this space,” says Dr. Abelson, citing the range of tools and resources that her team produces in English and French. These include evaluation tools – the Public and Patient Engagement Evaluation Tool (PPEET) and the Engage with Impact Toolkit, an Equity-Centred Engagement guide with tailored resources, and a recently released Creating Engagement Capable Environments framework. Patient partners, engagement specialists and researchers collaborated to develop all tools and resources in partnership with the PPEC.
Dr. Abelson and her team are also actively supporting the implementation of health system transformation in the province through Ontario Health Teams (OHT)s. This demonstrates the dual-purpose impact of their work on both the research community and OHTs. For example, the Engage with Impact toolkit, initially designed for health system partners, is also being used to assess the impact of engagement activities by research teams.
“Involving people with lived and living experience both effectively and ethically is not easy to do and has historically been under resourced. More recent CIHR investments through the Strategy for Patient Oriented Research (SPOR) have helped but there’s still room for more innovation in this area.”
By combining research and practice to develop numerous tools and resources, the PPEC is an important support for those working to transform health systems.