Myeloma Priority Setting Partnership

The Myeloma Priority Setting Partnership (PSP) was led by MSSU Saint John, NB Science Lead Dr. Anthony Reiman and governed by a Steering Group that has equal representation from people living with myeloma, caregivers, and healthcare providers. Together, this group identified and prioritized questions about myeloma that can be answered through research—and, importantly, reflected the needs of people with myeloma and those who care for them.

Objectives

1. Identify Research Questions: Following the James Lind Alliance (JLA) method, the Myeloma PSP team developed a survey that asked people to share the questions that they most wanted to see answered through research. The team received more than 500 responses identifying more than 3,000 possible research questions.
2. Prioritize Research Questions: After the first survey, were consolidated into a long list of 60-70 indicative questions. Questions that haven’t been answered by prior research were added to a second survey, so  people could select the questions that matter most to them.
3. Select the Top 10 Myeloma Research Questions: A short list of 20-30 questions were identified in the second survey. The Myeloma PSP Steering Group selected a final list of 10 priorities. The process was overseen by the James Lind Alliance (JLA), a UK-based, non-profit organization.

Funder

Myeloma Canada is a non-profit, charitable organization created by, and for, Canadians impacted by multiple myeloma, a relatively unknown cancer of the plasma cells. Exclusively devoted to the Canadian myeloma community, Myeloma Canada has been making myeloma matter since 2005. As a patient-driven, patient-focused grassroots organization, Myeloma Canada drives collaborative efforts to unify the voice of the community to effectively shape the Canadian treatment landscape.