| Title: |
How should multiple myeloma research change in a patient-oriented world? Findings and lessons from the pan-Canadian myeloma priority setting partnership |
| Authors: |
Sarah Bridges, Samantha Fowler, Lauren McLaughlin, Marc Robichaud, Barbara Ridgway, Donna Reece, Kevin Song, Lorelei Dalrymple, Robin Sully, Sharon Nason, Suzanne Rowland, Trish MacDonald, William Paine, Adrienne Gulliver, Anthony Reiman |
| Source: |
Research Involvement and Engagement, Vol 9, Iss 1, Pp 1-15 (2023) |
| Publisher Information: |
BMC, 2023. |
| Publication Year: |
2023 |
| Collection: |
LCC:Medicine
LCC:Medicine (General) |
| Subject Terms: |
Priority setting, Patient and public involvement, Patient engagement, Multiple myeloma, Medicine, Medicine (General), R5-920 |
| More Details: |
Abstract Background Over the last decade there has been considerable research into the treatment, management, and quality of life of people living with multiple myeloma. However, there has been limited investigation into topics deemed important to patients and caregivers within this community. We conducted a James Lind Alliance Priority Setting Partnership to establish the ‘Top 10 Priorities for Myeloma Research’, informed by patient and public partners. Methods A research team and steering group were established in 2019 to conduct the myeloma priority setting partnership. Steering group members included patients, caregivers, and healthcare providers who advised the research team and oversaw the scope of the project, grounded on their lived experience. Following the James Lind Alliance guidelines for identification and ranking of research questions, we used surveys and a virtual workshop to collect and prioritize questions posed by myeloma patients, caregivers, and healthcare providers across Canada. Results The Top 10 list of priorities for myeloma research was finalized at the consensus-building workshop and encompassed questions related to diagnosis, treatment, management, and living well with myeloma. A final participant evaluation survey elicited a positive response. Interpretation The myeloma priority setting partnership identified the research priorities of people living with myeloma, caregivers, and healthcare providers to inform clinical research on this disease going forward. This project underscores the importance of patient and public engagement in the identification of research questions, highlighting the concerns of people affected by myeloma to ultimately improve the lives of people living with this disease. |
| Document Type: |
article |
| File Description: |
electronic resource |
| Language: |
English |
| ISSN: |
2056-7529 |
| Relation: |
https://doaj.org/toc/2056-7529 |
| DOI: |
10.1186/s40900-023-00476-9 |
| Access URL: |
https://doaj.org/article/dea63a4180264a4e894a9dd3fc7eb59e |
| Accession Number: |
edsdoj.63a4180264a4e894a9dd3fc7eb59e |
| Database: |
Directory of Open Access Journals |
