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Myeloma Priority Setting Partnership (PSP)

What is the Myeloma Priority Setting Partnership - Phase II ?

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. This is an exciting first-time initiative in myeloma and will help set the right direction for myeloma research and call to funders to recognize these prioritized, unanswered questions.

The Myeloma PSP is a 3-phase project. (Please see “How does the Myeloma PSP work?” below for more information.)

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
 Prioritization Survey.

DOWNLOAD THE SURVEY NOW

How does the Myeloma PSP work?
Phase I (complete)

In the Fall of 2019 we conducted the first survey asking people living in Canada with myeloma, their caregivers, clinicians and healthcare professionals what they felt were the most important myeloma research questions to be answered. The 1st survey was completed in January 2020 and a total of 594 patients, caregivers, and healthcare professionals submitted 3,032 questions on what they’d like to see answered on the diagnosis, treatment, management, and living well with myeloma. 

All responses are anonymous and information shared is strictly confidential.

Phase II (in progress) and Phase III

The 3,302 questions from the 1st survey have been filtered down to the 45 most popular questions that fall within the scope of this initiative. These are the questions that appear in the 2nd survey, now underway. In this prioritization survey, we’re asking people living with myeloma, their caregivers and healthcare professionals to select their top 10 priority research questions from these 45 questions.

Once the 2nd phase survey closes, a group of researchers from Horizon Health Network in New Brunswick together with the Myeloma PSP team will analyze all responses and create a short-list of research priorities. The short-listed topics will go forward to the 3rd phase of the program, a final workshop involving people impacted by myeloma (patients, caregivers) and healthcare professionals. Together, they will create the final Top 10 Myeloma Research Priority Questions.   

This final list of Top 10 Myeloma 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: January 15, 2020
Survey link: http://bit.ly/Myeloma10
Launch date of 2nd survey:          November 18, 2020
Closing date of 2nd survey: December 30, 2020
Myeloma PSP Twitter:           

@MyelomaPSP

Hashtag: #MyelomaPSP
Questions?   

Please contact Samantha Fowler
Myeloma Priority Setting Partnership Information Specialist
Maritime SPOR SUPPORT Unit, Saint John Regional Hospital
400 University Avenue
Saint John, New Brunswick E2L 4L2
Email: Samantha.Fowler@HorizonNB.ca
Tel: 1 (506) 648-6189

If you wish to speak to someone not involved with the study, please contact:
The Horizon Health Network Research Ethics Office
Tel: (506) 648-6094

Information about the PSP process can also be found on the James Lind Alliance website at https://www.jla.nihr.ac.uk/

Click here to download:

Myeloma Priority Setting Partnership (PSP)​ Survey

Phase II (in progress)

 

 

Myeloma Priority Setting Partnership (PSP)​Frequently Asked Questions

Phase II (in progress)

Phase I (completed)

 

Myeloma Priority Setting Partnership (PSP)​ Poster

Phase II (in progress)

 

 

Thank you for taking the time to help share your insights for the direction of future myeloma research. 

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).