- What is the minimum required level of public and patient engagement for this grant application?
- To what extent does the research team believe that public and patient engagement will improve the outcome(s) of this research?
- What is the potential for patients and members of the public to influence decision-making within the research process?
- What is the likelihood the research team will fully consider public and patient input?
- Which resources will be available to support public and patient engagement in this project?
When working to identify potential public and patient partners for research, consider the following:
- “Who is affected differently by this health condition?” – consider intersecting social and structural locations such as race, ethnicity, indigeneity, sex, sexuality, gender identity and expression, socioeconomic status, geography, age, size, mental health status, ability, immigration status, and religion.
- “Who has different access to healthcare services associated with this condition?” – Consider barriers to access such as geography and location (e.g. urban vs. rural, transit access) and systematic barriers such as racism, colonialism, classism, sexism, heterosexism, cis-sexism, ageism, sizeism, saneism, ableism, and religious discrimination.
- “Where are people at with their health condition?” – Consider people who may have recently developed a health condition as well as those who have had it for years, and those who have recovered or are in remission. Engagement may be more appropriate or feasible at different times depending on the condition.
- “How can I ensure diverse perspectives are included?” – The best way to choose which engagement methods and activities are most appropriate, inclusive, and desirable is to talk with patients, caregivers, communities, and the public to ask how they would like to be engaged.
To learn more, check out our blog post: How Do I Find People to Involve in Health Research?
Prior to committing to a public and patient engagement strategy, researchers should go out and talk with patients, informal caregivers, community organizations, and members of the public in order to better understand their expectations for research and willingness to become involved in the research project.
This means getting a better understanding of:
- Previous history of engagement: some populations have had negative experiences in the past, and may have hesitations and uncertainties about becoming involved in research again - be sensitive and understanding of these realities;
- Inequities (i.e. avoidable and unjust inequalities between and within groups of people) exist in relation to the health issue being researched (consider intersecting social and structural locations such as race, ethnicity, indigeneity, sex, sexuality, gender identity and expression, socioeconomic status, geography, age, size, mental health status, ability, immigration status, and religion - as well as processes of oppression such as patriarchy, colonialism, capitalism, sexism, heterosexism, cis-sexism, classism, ageism, sizeism, saneism, ableism, and religious discrimination;
- The values and expectations of people, families, and communities with lived experience of health issues;
- What is important to patients, informal caregivers, families, friends and communities;
- The expected level of engagement in the research project; and
- The way(s) in which public and patient partners would likely prefer to be involved.