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Myeloma Priority Setting Partnership

What is the Myeloma Priority Setting Partnership?

The Myeloma Priority Setting Partnership (PSP) is an important initiative led by a Pan-Canadian Steering Group working together to exclusively identify the research priorities of people living with myeloma, their caregivers and healthcare professionals. The Myeloma PSP is running their 1st of 2 surveys starting October 29, 2019.

What matters most to you?

Our objective is to give the Canadian myeloma community a louder voice, because no one understands myeloma better than those whose lives have been impacted by it. The Myeloma PSP will help set the right direction for myeloma research and call to funders to recognize these prioritized, unanswered questions.

It’s vital to Myeloma Canada that the research we fund and support reflects the needs of Canadians impacted by myeloma. The Myeloma PSP involves and empowers those affected by myeloma to play an active role in helping to influence the direction of future research.  This crucial project is guided and overseen by a steering group comprised exclusively of people living with myeloma, their caregivers and healthcare providers.

We need your help.

By hearing the research priorities of the myeloma community, we can push the funders, scientists and service providers to recognize the views and needs of those affected and get their questions answered.

Help influence the direction of myeloma research.
Participate in the Myeloma PSP.

Please take a few minutes and help influence the direction of myeloma research. 

DOWNLOAD THE SURVEY NOW

How does the Myeloma PSP work?

Starting on October 29, we want to hear from people living in Canada with myeloma, their caregivers, clinicians and healthcare professionals on what they feel are the most important myeloma research questions to be answered. All you need to do is answer a short online survey on what you see as the most important issues for future myeloma research. You can remain anonymous and even participate from the comfort of your home!

Once the survey closes, the Myeloma PSP team will go through all the questions received to ensure that they haven’t already been answered by previous research. Questions that have not yet been addressed will be grouped together to create the questions for a 2nd survey. The 2nd survey will be sent to anyone from the 1st survey who provided their contact information and indicated that they would like to continue participating in the project. In the 2nd survey, participants will be asked to rank the questions based on what they would like to most see answered. This will help reduce the long list of questions to a short list. This short list will then be brought forward to the final stage: a face-to-face workshop involving people impacted by myeloma (patients, caregivers) and healthcare professionals. Together, they will determine the Top 10 Research Priority Questions for myeloma

The Top 10 Research Priority Questions will be shared and promoted to encourage funders to commission researchers to answer the prioritized questions. The entire process is overseen by a UK-based, non-profit organization called the James Lind Alliance. For more information, please visit their website at http://www.jla.nihr.ac.uk/.


Key Myeloma PSP Information

Launch date of 1st survey: October 29, 2019
Closing date of 1st survey: December 10, 2019
Survey link: http://bit.ly/MyelomaPSP
Launch date of 2nd survey:          TBD - It usually takes a few months to consolidate and verify all questions from the 1st survey and prepare for the 2nd survey. Stay tuned for more information.
Myeloma PSP Twitter:           

@MyelomaPSP

Hashtag: #MyelomaPSP
Questions?   

Please contact Lauren Cook
Myeloma PSP Coordinator
Clinical Research Assistant
Maritime SPOR SUPPORT Unit
Lauren.Cook@Horizonnb.ca
(506) 638-2410

Click here to download:

 

 

 

The Myeloma Priority Setting Partnership is led by Dr Tony Reiman, Canadian Cancer Society Research Chair and medical oncologist. The program is proudly supported and funded by Myeloma Canada and guided by the James Lind Alliance. This project has been approved by the Horizon Health Network Research Ethics Board (RS 2019-2788).