Canadian Myeloma Priority Setting Partnership

Canadian Myeloma Priority Setting Partnership (PSP)
Do you have questions about myeloma? If so, we want to hear from you.

Why is this survey important?
This survey gives you, persons with myeloma, caregivers, and healthcare providers, the opportunity to tell us what is most important to you about myeloma so that we can share your priorities with research funders. This is the time for you to be heard and influence important research that will have an impact on your life.

Who should take part in this survey?

  • People with myeloma
  • Caregivers, family, and friends of people with myeloma
  • Healthcare providers (including nurses, physicians, pharmacists, and others) who care for people with myeloma

‚ÄčWhat is involved if I take part in the survey?
You will be asked to complete a brief survey about your own experience with myeloma and questions you have because of your experience. The survey will take about 10 minutes to complete and you do not need to answer any questions that you do not want to answer. You do not need to complete the survey all at once, you can save your progress and return later.

At the end of the survey you will be asked if you would like to take part in the second phase of this project by helping to decide which of the identified research topics are the most important. If you agree, you will be asked to provide your name and contact information.

Will my answers be kept confidential?
All personal information will be kept confidential and when we release the results of this survey, we will never name any individual who took part in this survey. Data will be securely stored at the Saint John Regional Hospital and destroyed after seven years.

Who is supporting this survey?
This project is led by a research team from Horizon Health Network in New Brunswick. This team is supported by the Canadian Institute for Health Research (CIHR) and the New Brunswick Health Research Foundation (NBHRF).

The project is supported and funded by Myeloma Canada (https://www.myelomacanada.ca/) and follows the methods of the James Lind Alliance (http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/), a non-profit initiative based in England.

What will happen to the results?
Your question(s) will be gathered together and examined with questions we receive from everyone else who takes part in this survey. We will combine similar questions into summary questions and check to see if these have been answered by research. Questions that have not been answered by research will be sent out in a second survey so that they may be prioritized. Based on responses to the second survey, a steering group of persons with myeloma, caregivers, and healthcare providers will make a top 10 list. The list will be published and will be used to influence future research decisions.

Who can I contact for more information?
If you would like more information about the project, please contact:

Lauren Cook – Myeloma Priority Setting Partnership Coordinator
Maritime SPOR SUPPORT Unit, Saint John Regional Hospital
400 University Avenue
Saint John, New Brunswick E2L 4L2
Email: Lauren.Cook@HorizonNB.ca
Tel: (506) 638-2410

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

By answering the questions that follow, you are consenting to participate in this project. 

Thank you for your participation and helping to influence important research that will have an impact on those living with myeloma.