Myeloma Priority Setting Partnership launches first survey

Publication Date: 
Tuesday, October 29, 2019

Today, the Myeloma Priority Setting Partnership (Myeloma PSP) launched a survey to learn the research priorities of people living with myeloma, caregivers, and healthcare professionals. 

The Myeloma PSP survey is anonymous and asks a series of questions to find out what questions about myeloma respondents would like to see answered through research. 

The results of this initial survey will be reviewed, and any questions that haven’t been answered by past research will be grouped together into a long list of potential research questions. 

A second survey will ask respondents to rank the long list of research questions based on what they would most like to see answered. This priority setting will reduce the long list to a short list of potential research questions. This short list will then be the focus of a workshop where people living with myeloma and caregivers, healthcare providers, researchers, funders and other stakeholders will work collaboratively to select the ‘Top 10 Research Priority Questions.’

These Top 10 Research Priority Questions will be shared and promoted to encourage funders to support research designed to answer these priority questions.

“Myeloma Canada is committed to supporting research and making sure patients and caregivers have a voice in influencing research that will make an important difference to them. This is why we believe in the Project Priority Setting process established by the James Lind Alliance to help identify those important research questions using insights from patients and caregivers,” says Martine Elias, Executive Director of Myeloma Canada.

“This survey represents an opportunity for myeloma patients, caregivers and clinicians across Canada to tell researchers what are their priority issues and unanswered questions. This has never been done before [for myeloma],” says Dr. Anthony Reiman, Canadian Cancer Society Research Chair, University of New Brunswick, and MSSU Science Lead in Saint John.

“What we learn from this initiative will be used to guide myeloma research efforts, both in Canada and around the world,” adds Dr. Reiman.

The Myeloma PSP project is proudly supported by Myeloma Canada and the Maritime SPOR SUPPORT Unit, with the entire process overseen by a UK-based, non-profit organization called the James Lind Alliance.

Take the survey online