Nothing about me; without me.
You can guide research and maximize its findings by becoming a research partner and sharing your experience of living with a neuromuscular disorder.
Canadians affected by neuromuscular disorders, their families, and advocates are increasingly asked to take an active role in research, but they often feel unprepared to participate. To ensure individuals feel prepared to become a research team member, the Neuromuscular Disease Network for Canada (NMD4C) in partnership with Muscular Dystrophy Canada offers online, self-directed, free training modules.
Research training empowers individuals and ensures they have the confidence and knowledge needed to share their expertise, guide discussions and inform decisions regarding health care, research, and therapy development with policymakers, industry and scientists.
The modules help patient partners, researchers, trainees, and others on research teams, to do patient engagement in neuromuscular research.
As a patient partner for a research team, you’ll:
- Bring new perspectives to the research team
- Provide research teams with knowledge – both lived and relevant experiences
- Inform research priorities and outcomes that are important to Canadians affected by a specific neuromuscular condition
- Be provided with opportunities to engage your community with research
- Help foster new research partnerships
- Help trainees learn from patients
- Give individuals with lived experience a voice in which health topics are researched, and
- Transform patients from passive recipients of health services into proactive partners who help shape health research and healthcare.
Exciting, right? Get started now at: importnd.neuromuscularnetwork.ca. For further details email our research hotline at research@muscle.ca or call 1-800-567-2873 ext. 1114.
Frequently Asked Questions
What’s the difference between a research participant and a patient partner?
Participants are “subjects” to be studied, in a clinical trial, survey or interview. As a patient partner, you are an equal member of the research team. You determine how you want to be involved in the study, and help produce research that impacts treatments and therapies offered in the future.
Why should I become a patient partner in research?
Becoming a patient partner is a way to use your lived experience to break down barriers for the neuromuscular community and improve healthcare. You’ll expand your knowledge and your network by working with healthcare professionals and researchers, and you’ll be paid for your work and time.
How will I make a difference as a patient partner?
Patient partners share their knowledge and experiences with research teams to produce research that will lead to better treatments, therapies and healthcare policies for the neuromuscular community. It is important that the patient voice is heard so that the uniqueness of each disorder and the patients journey are taken into considered.
Does a patient partner need any special skills?
No, you will receive all the training you need through the imPORTND program. The imPORTND modules provide foundational, neuromuscular-specific training to help research team members and patients become familiar with the neuromuscular research environment as it relates to patient engagement and take the first steps towards working together.
Who developed the content offered in this program?
The modules were developed by MDC and NMD4C’s Patient-Oriented Research Resources working group, which includes patient partners affected by neuromuscular disorders, clinicians (neurologists, occupational therapists), researchers, and others in Canada.
A first of its kind in Canada
imPORTND was launched by Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C).
Focused on a ‘Nothing about me; without me’ patient-centred approach, the platform contains multi-media training modules that provide training on how to conduct research that is informed by, and most meaningful to individuals affected by neuromuscular disorders. These modules are designed for all neuromuscular research team members including researchers, staff, and patient partners. imPORTND was co-developed with a team of expert patient partners, clinicians, researchers, and patient partner organization members, and is the first POR training developed specifically for neuromuscular disorder research.
