Organizations such as the International Association for Public Participation (IAP2) encourage people to do an internal and external assessment before developing an engagement strategy. What that means with regard to patient and public engagement in health research is researchers beginning with an internal assessment by asking themselves the following questions:
- What is the minimum required level of patient and public engagement for this grant application?
- To what extent does the research team believe that patient and public engagement will improve the outcome of the 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 patient and public input?
- What resources are likely to be available to support patient and public engagement in the research project?
It is important that researchers go out and talk with patients, informal caregivers, the public and community groups in order to better understand expectations and willingness to become involved in the research project. This means getting a better understanding of:
- Previous history of engagement (i.e. some populations have had very negative experiences with researchers in the past and may have hesitations and uncertainties about becoming involved in research again - you must be sensitive and understanding of these realities).
- What inequities (i.e. avoidable and unjust inequalities between and within groups of people) exist in relation to the health issue being researched (remembering to think about the intersecting social and structural locations such as gender identity, race, ethnicity, Indigeneity, socioeconomic status, sexuality, gender expression, immigrant status and religion - as well as processes of oppression such as patriarchy, colonialism, capitalism, racism, ableism and heterosexism)?
- What are the values and expectations of people, families and communities living with the health issue?
- What's important to patients, informal caregivers, families, friends and communities?
- What level do people expect to be engaged in the research project and how would they prefer to be involved?