Horizon Research Services eNewsletter (Issue 6, Volume 5), June 2020.
Where do ideas for research come from? Many times, they come from one or more of Horizon’s healthcare professionals: physicians, nurses, pharmacists, occupational or physical therapists; the list goes on. But what about those individuals affected – the person living with the disease, or the person providing care to a patient? Would they ask the same questions? This question motivated several Horizon staff to engage with patients and clinical representatives across Canada to find out.
Lauren McLaughlin, clinical research assistant with the Maritime SPOR SUPPORT Unit (MSSU), was asked to present on patient engagement. Looking for a strong example of an engagement framework to ground her presentation – one where patients or caregivers had equal stake at the table so their voices would be heard – she came across Priority Setting Partnerships, or PSPs. The PSP is a formal process that brings together those with lived experience and those treating a disease, to establish priority questions for researchers on a particular topic. PSPs are established and overseen by the James Lind Alliance (JLA), a UK organization that provides international leadership for patient engagement in health research.
When Lauren shared the concept of the PSP with Dr. Tony Reiman, medical oncologist at Horizon’s Saint John Regional Hospital, he felt that a PSP would be a great opportunity for Myeloma Canada to hear more from the Canadian myeloma community. And since January 2019, Lauren, along with Dr. Reiman and Samantha Fowler, MSSU clinical research manager, have worked to create and support the Myeloma PSP – the very first for multiple myeloma, in Canada or elsewhere. The Myeloma PSP consists of a national Steering Group of 3 persons living with myeloma, 4 caregivers, and 3 healthcare professionals. Together, they created a national survey so that the myeloma community can identify areas that needed more research.
Two of the Steering Group members, Sharon Nason and Susan Collins, live in Saint John, and meet with the Horizon team regularly. When asked about her experience so far, Sharon (a caregiver representative), notes that “[In this partnership]…there is an appreciation of the collective knowledge and expertise of the group members, both in their knowledge of myeloma, and of their life and leadership skills.”
Earlier this year, the PSP closed their first survey, which received a remarkable 3,000 possible research questions from over 500 survey responses. The team is currently working on consolidating the massive amount of new potential topics that will eventually become the group’s recommendations for the Top 10 Priority Questions for myeloma research in Canada.
Despite the mountain of data under review, Susan, one of the persons living with myeloma, reflects that, “Myeloma seems to be a very individual disease which presents itself in different ways, including its impact on quality of life…Through the stages of the project I have seen common themes emerging and I believe that those of us who are living with myeloma will feel that the results show the path forward for meaningful research.”