Patient Oriented Research Training - ImPORTND
The ImPORTND platform offers online, self-directed, free training modules on how to conduct research that is informed by, and most meaningful to individuals living with neuromuscular diseases. The modules are designed for all members of the study team: including researchers, lab staff, and patient- and family partners.
ImPORTND has been co-developed with a team of expert patient partners, clinicians, researchers, and patient partner organization members, and is the first patient oriented research (POR) training developed specifically for neuromuscular disease research. The training modules are available in English (ImPORTND) and French (InFORMERMN).
As patient partners, our voices give deeper understanding to neuromuscular conditions, with each one of us sharing our unique lived experiences. Together with medical research teams, we prioritize meaningful timely research that immediately serves to improve quality of life.
NMD4C Patient Research Partner, and contributor to the imPORTND training modules
The ImPORTND training modules serve to provide foundational, neuromuscular-specific training to help patients become familiar with the neuromuscular research environment as it relates to patient engagement and to take the first steps towards becoming a trained patient partner. On completion of both modules, a certificate of training will be available to download.
As requirements for patient engagement in research continue to grow, many researchers and patients have questions about how to begin working together. By signing up for the ImPORTND training modules you will gain access to neuromuscular-specific training to help you and your research team become familiar with the neuromuscular-specific research environment as it relates to patient engagement and become comfortable in taking your first steps towards working with patient partners.
Canadians affected by neuromuscular disorders and their families are increasingly asked to take an active role in research, but they often feel unprepared to participate. The training provided through ImPORTND will ensure people have the confidence and knowledge needed to be involved in all stages of research: decision-making, design, planning, delivery, evaluation and knowledge mobilization. The modules will help ensure patient and family partners are well-equipped to share their lived expertise, guide discussions and inform decisions regarding health care, research, and therapy development with policymakers, industry and scientists.
Dr. Homira Osman
Vice President, Research and Public Policy, Muscular Dystrophy Canada
When patients and researchers collaborate on projects, the work they co-create is more meaningful and able to make real and positive impacts. Learning to work together is what ‘ImPORTND’ is all about. The modules focus on the tools, skills and relationships needed by researchers, patient-partners and clinicians to partner for work that is more inclusive, equitable, diverse and accessible.
Dr. Kathryn Selby
Medical Director, Pediatric Neuromuscular Program of BC and the Yukon, and Patient-Oriented Resources Lead Investigator at NMD4C
How does patient engagement benefit the neuromuscular research community?
As requirements for patient engagement in research continue to grow, many researchers and patients have questions about how to begin working together. IMHA is the CIHR institute which covers neuromuscular research and is the first institute which actively encourages its research community to embrace the incorporation of patient engagement in the research process. It is vitally important that both researchers and patients appreciate the mutual benefit of patient engagement in research, which can include:
- Bringing new perspectives to the research team
- Helping research teams appreciate patient knowledge - both lived and relevant experiences
- Informing research priorities and outcomes that are important to patients
- Providing opportunities to engage patients' larger communities with the research
- Fostering new research partnerships
- Helping trainees to learn from patients
- Giving patients a voice in which health topics are researched, and
- Transforming patients from passive recipients of health services into proactive partners who help shape health research and health care
What does the ImPORTND training provide to research teams and patients?
The ImPORTND training 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.
In the first module, Readiness for Patient-Oriented Research, researchers, and patient partners learn to understand their own attitudes, respect different perspectives, build relationships and identify the skills and help that are available to engage meaningfully as a researcher or patient partner.
In the second module, Inclusion/Diversity/Equity/Accessibility (IDEA), researchers and patient partners learn how to build more inclusive and equitable research practices to more fully represent the diverse population of those living with a neuromuscular condition. All participants gain the skills and tools needed to support the accessibility needs of patient-partners living with a neuromuscular condition to engage more fully in research.
In the third module, Skills for Patient-Oriented Research, learners are taught specific skills to help with patient-oriented research. This includes how to develop an effective patient engagement plan, how to share and listed to patient stories, how to work effectively in groups and how to evaluate the project engagement.