Expert Patient Capacity Building

Canada’s strategy for patient-oriented research (SPOR) puts ‘patients first’ by having patients, researchers, health-professionals, and decision makers work together in partnership to plan and conduct research (CIHR, 2015). With this approach, Canadians with NMD, their families, and advocates are increasingly asked to take an active role in research. Research and advocacy training empowers patients and ensures they have the confidence and knowledge needed to bring their expertise forward to guide discussions and inform decisions regarding health care, research, and therapy development with policy makers, industry and scientists. International RD advocacy organizations, such as EURORDIS (Rare Diseases Europe) provide highly effective training for families with RD via their ‘Open Academy’, but similar trainings providing Canadian and NMD context is lacking.

NMD4C EPCB Working Group

To meet this need, the expert patient capacity building (EPCB) group in collaboration with MDC and a group of patient-partners are working to establish expert patient capacity building in the Canadian neuromuscular community. The EPCB team welcomed Patricia Mortenson in April 2021 to the role of project coordinator. The group pursued a landscaping exercise to gather the available resources for patient-oriented research (POR) and best practices, and has published a database to share this information. Working with patient partners and knowledge translation experts, the working group is developing easy-to-use and accessible Canadian NMD patient training modules to train both patient partners and researchers.

The group also provides opportunities for patient partners to engage in network research projects: Dr. Cynthia Gagnon’s comprehensive natural history of oculopharyngeal muscular dystrophy study, and will be included in an upcoming SMA decision-making project.

Ongoing Work

The EPCB working group plans to deliver a network-wide POR training webinar to build POR knowledge and culture within the NMD4C’s work, deploy five patient partners to three network projects, create and share a POR resource catalogue on the NMD4C site. The team will develop training modules based on the framework for NMD-specific training for patient partners and researchers, evaluate the training modules with patient partners and researchers, and will develop a structure within the NMD4C for POR sustainability.