Public and patient engagement in health research means people, informal caregivers, families, friends, communities, and members of the public with lived experience of health conditions having a say in decision-making about the research process - including research priorities, questions, outcome measures, design, methodology, data collection, interpretation of results, and dissemination.
The Canadian Institutes of Health Research's Strategy for Patient-Oriented Research (SPOR) defines patient-oriented research as a continuum of research that:
1. Engages patients as partners
2. Focuses on patient-identified priorities
3. Improves patient outcomes
4. Is conducted by multidisciplinary teams with relevant stakeholders
5. Aims to apply the knowledge generated to improve healthcare systems and practices
- The Earlier the Better – Start engagement at the earliest possible stage of the research project.
- Be Accessible – It takes time and effort to build these relationships.
- Choose an Inclusive Engagement Method or Participatory Approach – The appropriate method depends on the research and the people you're working with. Ask public and patient partners how they prefer to be engaged.
- Safety First – Experiences and experiential knowledge are often intertwined with experiences of trauma. In an effort to prevent re-traumatization, have a discussion about safety and safe spaces with the research team, including public and patient partners. This includes asking questions like "What does safety mean to everyone?" and "What does safety look like and feel like?"
- Ensure People Feel Supported – Ask how you can help meet public and patient partners' needs, and provide them with necessary resources (e.g. parking passes, computer access). Consider including support services (counselors, Elders, etc.) in engagement activities, and provide a list of low-cost or free counseling resources (see Winnipeg example).
To learn more, check out our blog post: Five Point Checklist When Planning for Patient Engagement