Patient, Caregiver, and Healthcare Provider Priorities for Future Multiple Myeloma Research: Results of a James Lind Alliance Priority Setting Partnership

Multiple myeloma, also referred to simply as myeloma, is an incurable cancer of the plasma cells. Every year, more than 3,000 Canadians are diagnosed with myeloma and more than 1,000 Canadians die from this disease. As a result of recent advances in treatment, people are living longer with myeloma. However, as the disease has yet no cure, further research is needed to continuously improve the diagnosis, treatment, and management of myeloma, and to provide a better quality of life for those living with this disease.

The first project of its kind for myeloma, the Canadian Myeloma Priority Setting Partnership (PSP) was established in 2019 to identify research priorities shared by people with myeloma, caregivers and healthcare providers. The Canadian Myeloma PSP followed the rigorous methodology developed by the James Lind Alliance (JLA), a UK-based, non-profit initiative that seeks to reduce the gap that exists between funded research and the needs of the community. The project was generously funded and supported by Myeloma Canada, a national charitable organization exclusively devoted to improving the lives of Canadians impacted by myeloma.

Following the JLA guidelines, we convened a national steering committee whose members consisted of people with myeloma, caregivers and healthcare providers; together, they guided the iterative priority setting process. The first phase of the process involved the development of a survey used to elicit unanswered research questions, also known as "uncertainties," relating to four wide-ranging topics: diagnosis, treatment, management, and living well with myeloma. The survey generated 3,042 uncertainties from 594 participants from across Canada.

In the second phase of the process, the uncertainties were processed and verified according to the JLA guidelines to produce 76 indicative questions. These questions were subsequently reviewed to determine whether they fell within the project scope, and then compared against all available systematic reviews and clinical practice guidelines on myeloma published within the previous ten years (2010-2020). This process yielded 45 indicative questions that were both within the scope of the project and unanswered by previous research.

The third phase involved an interim prioritization survey which asked participants to select and rank their top 10 questions for future myeloma research from among the list of 45 indicative questions. A total of 651 participants from across the country completed the second survey and the results were used to create a shortlist of 18 questions. The shortlist was then submitted for discussion at a consensus-building or prioritization workshop.

The prioritization workshop, the final phase of the PSP process, was held in April 2021. The online event was attended by 23 participants (people living with myeloma, caregivers and healthcare providers), while four JLA Advisors facilitated the discussions using nominal group techniques.

This event produced a ranked list of the top 10 research priorities for future research on myeloma (see Table 1).These priorities will be disseminated as widely as possible among researchers, clinicians, research funders and the broader myeloma community. The goal is not only to inform on, but also to solicit funding for future research directions that are meaningful to those directly affected by the disease.

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