As a team of patient advisors and scientists, we recently participated in developing a grant proposal to advance the health of our community by sharing personal and community members’ experiences in navigating the care system. In order to share the challenges we faced in the process, we decided to pen an article on the barriers to including patients as partners in research when applying for grants from funding agencies. With this plan in place, the two patient advisors (Shabani and Rashed), who are also co-chairs of the Taylor-Massey Residents Wellness Council (TMRWC) that toils alongside the East Toronto Health Partners (ETHP) on the east side of Toronto, took the lead in writing. 

As co-chairs of the TMRWC, Shabani and Rashed have been involved in establishing a health access clinic in the Taylor Massey neighborhood, an equity-deserving neighborhood in East Toronto. Health Access Taylor-Massey (HATM) provides both clinical care services, such as access to primary care, and social support services to address social determinants of health. This includes providing a range of services, such as newcomer and settlement support, supportive counselling and case management, along with help in navigating available resources for those with complex issues. 

Patient partners have unique insights into what works and what does not work in healthcare delivery in our local community, as well as the challenges and opportunities for improvement in patient engagement in research. By involving patients and caregivers in research, we bridge the gap between lived experience, research and practice. This will enable providers and decision makers to better understand the needs and perspectives of those they serve, and create interventions that are more effective, efficient and patient-centred. 

The concept of engaging patients as partners in research is a great idea that can start with developing a proposal and then applying for grants. In our case, we planned to apply for a Canadian Institutes in Health Research (CIHR) grant. The steps to submit a CIHR grant with patient co-applicants are as follows: open an account on ResearchNet, acquire a personal identification number (PIN) and create and submit a curriculum vitae (CV) for each patient partner. It seemed simple enough – or so we thought. 

We found that the procedures were not patient-friendly and posed challenges for all the team members. While one patient partner was facing obstacles getting his PIN, the other patient partner did not have an existing ResearchNet account and needed additional support from scientists on the team to navigate the process, which took longer than expected. Questions about patient partners’ “affiliations” caused further confusion. No resources are available that can assist patients in these procedures, to the best of our knowledge. It is the responsibility of the scientists and patient partners to navigate these complexities on their own. This was considered a significant barrier.

The process of developing a CV for each patient partner was considered another barrier by the team. The scientists on our team had experience crafting CVs describing their previous work experience relevant to the grant proposal, but this process was new to our patient partners and required additional time and resources for planning and coaching on behalf of the research team.

After a while, panic creeped in. We had to make a choice: Do we involve our patient partners as co-applicants or collaborators? Including patient partners as collaborators is the easier route as there is no need for a CIHR PIN or a CV. In fact, in conversations with experts, this was the route that was suggested to us. However, including patients as collaborators would mean their names would not appear on the grant application. This was disheartening as the team aimed to meaningfully involve patients as partners in the proposal. Excluding patient names dismisses all the hard work they have put into the proposal development. 

While we admire funding agencies such as CIHR’s attempt to encourage patient engagement in research, we believe that the current process is not patient-friendly. An easy but temporary fix would be for researchers to do the work (e.g., create ResearchNet accounts and CVs) on behalf of patient partners, but is this an inclusive approach? Does doing this enable meaningful patient engagement involving them in the entire research cycle? Or, does this take power and ownership away from patients, and send a message that the process is too complicated for patients to even try? The better approach, in our opinion, would be to employ the principles of co-design: nothing about us, without us. After all, there are already significant barriers such as lack of time, resources and training, as well as structural, power and language imbalances that need to be addressed when engaging non-researchers throughout the research process. Our goal should be to reduce administrative barriers against those who are at the table and willing to participate.

We propose the following ideas for funding agencies’ to consider in order to facilitate patient engagement in research:

• Create a patient/caregiver advisory committee to explore and re-design the platform for patients, with patients.
• Create “how to” resources for both patients and researchers for navigating the process and the requirements when including patients in research. This includes providing clear instructions on how to engage patients in the process that are accommodating to different communication and mobility needs.
• Hire patient engagement specialists or train staff to assist callers with specific questions around patient engagement in research.

In short, funding agencies that encourage patient engagement in research should walk the talk and set an example for the next generation of researchers. If the goal is to meaningfully engage patient advisors in research, patients need to be included in the efforts to co-design a more inclusive process that facilities their involvement in the grant application process. By sharing our experience, our hope is to assist funding agencies to facilitate patient engagement in research and thereby make research findings more accessible and relevant to the end users of the care system. 

Comments

Melissa Pirrie wrote:

Posted 2024/01/08 at 12:51 PM EST