A Micro-grant that can lead to Macro Change
SCPOR’S PEADA AWARDS GIVE RESEARCHERS A HEAD START TO HELP THEM ENGAGE PATIENT PARTNERS
By Farha Akhtar, photos by Sidney Ray
Dr. Kristen Haase wants to help older adults and their caregivers maintain their health and wellness in the face of cancer and other illnesses. The Assistant Professor at the University of Saskatchewan’s College of Nursing conducts research with older adults with cancer and multimorbidity (co-occurring diseases) and their caregivers. As she points out, these individuals increasingly represent a growing proportion of those with cancer, yet they remain a ‘hard to reach population.’ Older adults have not been able to participate in many past clinical trials for cancer treatment because of their multimorbidity and frailty. These factors also make it difficult to participate in other clinical research studies that aim to enhance their patient experience. However, if these patient connections do happen, and researchers and patients are able to come together as research partners, it is nothing short of a major achievement. It can serve to better optimize care for older adults with cancer, and their caregivers.
Yet, it is often the other challenges associated with patient engagement that often intimidate resource-strapped researchers. How do you cover the practical costs associated with paying patient honorariums? How do you cover meeting costs? How do pay for the travel to and from team meetings?
These are all very real barriers that can discourage researchers from pursuing Patient-Oriented Research according to SCPOR’s Patient-Engagement and Empowerment Platform Lead, Malori Keller.
“POR focuses on patient-identified priorities and patients are engaged throughout the lifecycle of the project. Yet, researchers were expressing that there was a barrier to engaging patients particularly in application development.”
“They wanted to engage, but they didn’t have any funding to pay honoraria, expenses, and meeting costs,” she explains.
Keller says the idea behind the Patient Engagement Application Development Awards (PEADA) was to help researchers by providing them some initial start-up funding that could help them cover these expenses so they could engage patients in more active ways from the start. Teams can apply for up to $2,500 which they can use towards patient-engagement expenses ranging from paying for reading materials for patients, to even reimbursing parking expenses when they partner with them in the grant-writing process.
“Often without funds we saw minimal engagement: a telephone interview, a survey or a story that the researcher wrote about a patient’s experience that was reference as to how hearing a patient story influenced the researcher’s direction.”
“Now we see clearly that patients are helping to brainstorm the question, guiding how data will be collected and collaborating to decide how the research will be implemented in practice or translated to the public.”
Those are the types of contributions which Margaret Tompson, a patient partner, has been able to make as a member of Dr. Haase’s research team. The two met at a SCPOR speed-networking event in 2018 which was designed to connect researchers with patients interested in research. After receiving a Patient Engagement Application Development Award, Dr. Haase engaged further with Margaret.
“When Kristen said that she was working with older adults who had been diagnosed with cancer I was very interested in becoming involved in her project,” explains Tompson.
“She made me feel very welcome as she suggested we meet for coffee so that I could learn more about her research and she could find out a little more about why I was interested.”
The duo felt an instant connection in their shared research interests. Tompson, is an advocate for survivors of breast cancer and stem cell and bone marrow transplants. Together, she and Haase co-organized and co-hosted a public event called the Cancer and Aging Research Discussion Session(CARDS) in Saskatoon, which more than 20 older adults and their caregivers attended. At this session, attendees shared their experiences with cancer across the cancer trajectory, and even suggested possible directions research in this field could go. A second CARDS session is planned in Regina, where 12-15 more people are expected to attend.
“The shared leadership approach we used in CARDS had an impact on patient willingness to engage because they saw Margaret, a fellow older adult with cancer experience, right there alongside me leading the discussion.
“She has patient experience and I am not ashamed to say that in many ways, she is teaching me.”
A Springboard for POR Success
Interestingly, many recipients of PEADA have gone on to secure larger Patient-Oriented Research Awards including the SPROUT Grant: a funding opportunity presented by the Saskatchewan Health Research Foundation (SHRF) and SCPOR that provides a team up to $180,000 worth of funding for two years.
Out of the nine successful 2018-2019 teams to win SHRF-SCPOR’s SPROUT Grants, eight were PEADA awardees. One year earlier, all eight SPROUT Grant recipients had previously received PEADA.
Dr. Anthony de Padua is an Assistant Professor in the College of Nursing is exploring the experiences of spirituality and healing for Indigenous people living with HIV. He says he was able to use the PEADA funding to form key relationships with patients and family partners.
“PEADA funds helped me form key relationships with patient and family partners who helped direct the formation of my successful SPROUT grant application,” he explains.
“Without PEADA support I would not have travelled as often as I did to develop these key research relationships in the community.”
Engagement early On
Margaret Tompson says she feels strongly that patients should be involved in all aspects of research, especially the grant writing process. She says while they may not have a research background, their lived experience is crucial to the process.
“It can ensure that research being carried out is relevant to the community. If it is relevant and understandable to patients and their families then the outcomes and future research will receive support. It also ensures that the results will be disseminated further than just a journal article or a conference presentation.”
Dr. Kristen Haase recognizeshow the process and the outputs of research can change when patients are deeply involved. Her PEADA award will allow her to further engage Tompson as they continue to collaborate on this and future projects. This includes applying for an upcoming CIHR Catalyst Grant and a SHRF-SCPOR SPROUT grant.
“As an early career researcher making the leap into patient-oriented research was a bit daunting,” she admits.
“I knew it would elevate the quality of my work and the potential impact on cancer care, but I was worried about whether I was equipped to take this on amongst many competing demands.”
“However, I have found it to be a really refreshing change. The patients I have worked with have been so frank and thoughtful in sharing their wisdom and experiences. The interaction with patients as co-researchers across the continuum of involvement has renewed my interest and commitment to improve cancer care for this important population.”