Engaging Along a Spectrum
Starting in 2025, ENRRICH Catalyst Grants require family involvement in the grant application process/the project. Here, ENRRICH’s family engagement lead Carrie Costello shares information and insights on the variety of ways research teams can work with family partners.
When considering your research, it can be helpful to consider the partnerships you currently have and/or will need. Partnerships can include individuals, groups, or organizations that you currently or plan to engage with. Using a spectrum of collaboration can be a useful way to consider different relationships, both where the collaborations are currently and where you would like them to be.
In this blog, we will be using examples of patient and family engagement, but you can use this spectrum to consider any relationships in your research.
Patient and family engagement in research involves having children, youth, parents, and/or caregivers with lived or living experiences of the research topic as partners in research. Patient and family partners are colleagues within the research team, not participants in the project.
There are many different spectrums you can use to both plan for and measure your partnerships. My current favourite comes from the Tamarack Institute, visualized by the Center for Implementation. Below, I’ll provide more information along with my thoughts on each of the levels.
Compete: I love this spectrum because it forces us to consider who we are competing with. It is a reality of research, but not one that we often talk about related to engagement. What researchers, organizations, individuals, and community groups are we competing with for resources, partners, and public attention? With respect to patient engagement, this may look like competing with others for specific partners (children, youth, or caregivers). Alternatively, consider if there is competition with specific advocacy or disease-specific organizations for funding.
Co-exist: Often in research and engagement work we may not connect with others doing similar work or research. In this category, consider other research work in addition to community organizations, advocacy groups, and different patient populations you may not currently connect with. When family engagement is necessary as part of a funding application, researcher teams are encouraged to consider these first two levels, and ideally move beyond them, to begin connecting with families.
Knowledge exchange: This level of collaboration is about networking and the basic exchange of information. In patient engagement, this might look like signing up for a newsletter from a patient organization or posting your study recruitment information on a disease-specific Facebook page (e.g., knowledge exchange can go in more than one direction!).
As needed joint work: Within this level, researchers are working jointly with people with lived/living experience for a specific event or very short time period. Researchers might work with patients and families or community organizations to put on a webinar to share research findings. Or a researcher might be invited to speak at a community event. In patient engagement, this could involve engaging with an already developed advisory group. For example, bringing your interview guide or your participant recruitment materials to an already existing parent or youth advisory group. The RAC (Research Advisory Council (caregivers)) and the RACY (Research Advisory Council for Youth) are two groups that are supported by CHRIM and are available for researchers to connect with. This level is a good place to begin if you are newer to patient engagement or have very limited resources.
Ongoing joint work: In this level of collaboration, people and organizations work together in a more sustained manner. In patient engagement, this might look like creating an advisory group for a research project and engaging this group through the different stages of the research project. Another example might be working with a community or advocacy group to get continual feedback on a research project.
Collaborate: Here on the spectrum, relationships are more integrated because of shared goals. In patient engagement, this might be bringing youth and/or caregivers into your research team as co-investigators and considering their input in decision-making. This may also look like engaging in priority setting with the patients, families, and relevant organizations to explore what research might be needed on a specific topic.
Merge: Here, there is full integration of resources and decision-making. In patient engagement this might mean youth and/or caregivers are primary investigators, leading or co-leading the research. This might also be working with a community organization to jointly apply for funding that includes sharing resources and staff time. For example, a disease-specific organization wants to implement a new program. This organization co-writes a grant with a researcher, who will lead data collection and analysis about the effectiveness of the new program based on jointly decided outcomes.
Whether using the spectrum that I’ve shared here, or a different one, it is important for a research team to understand what level they are truly ready to work.
One great exercise is to identify the different relationships you have and/or will need to have to complete your project in the best way possible. These relationships could be with individuals, organizations, departments, etc. Put them all on the Collaboration Spectrum (or any other spectrum that works for you) reflecting where your working relationship is with them right now. With your team, discuss the ideal place for each of these relationships to be. Remember to discuss both moving relationships up to more intensive parts of the spectrum and moving relationships down to less intensive parts of the spectrum. This exercise can help you identify where to prioritize building or maintaining partnerships.
While ideally all projects are connected to patients and families in some way, not all projects need the (or may be ready for) more resource-intensive collaborations. Considering what relationships are the priority for your project, at what level, and the resources that are needed to support these relationships, is an important step in understanding where to focus your time and resources.
Published March 3, 2025
ABOUT THE AUTHOR
Carrie Costello is the Chair of the ENRRICH Parent Advisory Council, the Patient Engagement Coordinator for the Children's Hospital Research Institute of Manitoba, Co-chair of the Specialized Services for Children and Youth (SSCY)/Rehabilitation Centre for Children (RCC) Parent Advisory Council in Manitoba and the Parent Mentor/Liaison for the CHILD-BRIGHT Pan-Canadian Research Network. Her work in research involves supporting and connecting with parents in various ways to make sure the information and feedback they give is brought forward and addressed..can make all the difference.