Giving Patients And Caregivers A Voice In Setting Research Priorities
Generally, research projects are determined by those doing the research, but what about the people the research impacts?
One group is turning this idea on its head by bringing together those impacted by myeloma to make sure everyone has a chance for their voice to be heard – and their questions answered.
The project began as a discussion about patient engagement in research, said Dr. Tony Reiman, an oncologist at Horizon Health Network’s Saint John Regional Hospital and the Myeloma Priority Setting Project (PSP) Lead.
“Some of the work we do as researchers involves people that live with the disease and their caregivers, and I also do some work with Myeloma Canada, which is a national organization based in Montreal that was founded by a patient,” he said.
Myeloma Canada does patient advocacy, awareness, and education, as well as raising funds for research, said Dr. Reiman, and wanted to learn more about what research was important to people impacted by the disease.
While trying to determine the best way to do that, the team learned about a priority process established by the James Lind Alliance in the United Kingdom.
For this project, the New Brunswick team, which is part of the Maritime SPOR SUPPORT Unit (MSSU) and funded through from the Canadian Institutes of Health Research (CIHR) and New Brunswick Health Research Foundation (NBHRF), partnered with the James Lind Alliance and Myeloma Canada, who provided some funding for the project.
Their goal is to set priorities so researchers can best serve the people they are hoping to help, said Lauren McLaughlin, MSSU Clinical Research Assistant in Horizon Health Network and the Myeloma PSP Coordinator.
“Research is publicly funded. It affects the treatment and the quality of life of patients. Why shouldn’t they have a say in what gets researched and what’s going to affect them,” she said.
To determine those priorities, the team is doing two surveys. The first survey, which ran from October 2019 to January 2020, asked respondents what questions they had about the diagnosis, treatment and management of myeloma, living well with myeloma, and if they had any other questions related to the disease.
For the first round, the team surveyed 594 respondents and received 3,042 separate questions in response, said Samantha Fowler, MSSU Clinical Research Manager in Horizon Health Network and the Myeloma PSP Information Specialist.
“I’ve organized the responses into summary questions and currently I’m checking them against the literature to see if they’ve been answered,” she said. “It was a lot to go through, but you get a good sense of what people with myeloma are experiencing. It really reminds you why we are doing this project.”
Any questions that haven’t already been answered are going into a second survey which will come out this fall. In that survey, respondents will be asked to select their top 10 research priorities from the options listed. Once they have this information, the team can use it in a variety of ways, including sharing it with funders like Myeloma Canada so they can set their own research priorities.
Among those helping to guide this project are Susan Collins and Sharon Nason, members of the Myeloma PSP steering committee.
Collins is living with multiple myeloma and wanted to take part because not only is she interested in research, she understands its value. Being part of this team offered her the opportunity to provide her unique perspective.
“When you live with a disease like myeloma where there is no cure in sight, it colours whatever you do,” said Collins. “I hope the researchers will use the results to direct their research to issues that will improve our lives as we’re going through it.”
As a caregiver, Nason also appreciates having the chance to provide her perspective. Her father had multiple myeloma and died in 1990, her sister was diagnosed in 2007, and her first cousin was recently diagnosed with the disease.
“I think what’s really nice is that we are all equal members,” she said of the steering committee. Plus, she is learning a lot by being involved. “Not just about how research works, but I’m really learning a lot about myeloma, even about treatments.”
She would encourage anyone who was invited to be part of this kind of team to do so.
“This whole thing with patient-centred care, I think is such a wonderful way for our health-care system to go,” said Nason.
Dr. Reiman also sees the benefits of working together to set priorities, whether it is in myeloma or other areas of research.
“For the people affected, it’s great for them to know that they have the opportunity to contribute and have a voice in setting the research priorities so that we can determine what areas we need to focus on in order to do better in caring for these patients.”
Besides McLaughlin, Fowler and Dr. Reiman, the research team includes Marc Robichaud, MSSU Research Professional and Myeloma PSP Consultant.
This story was sponsored by the New Brunswick Health Research Foundation.