Why this program exists
At WSCN, we are committed to patient-first research: inquiry that honors lived expertise, invites patient voices at every stage, and produces actionable, inclusive, transformative knowledge.
We know that research is stronger when the people affected by a condition help shape it. Too often, patients and caregivers are consulted late, asked only to react to decisions already made or treated as research subjects rather than genuine partners. This can lead to studies that overlook practical barriers, measure outcomes that matter less to people, or produce findings that are difficult to use in everyday care.
The Patient Leadership in Research program helps change this in two ways: by training people with lived experience to collaborate confidently and constructively with research teams, and by connecting research projects to our trained collaborators.
We know that research is stronger when the people affected by a condition help shape it. Too often, patients and caregivers are consulted late, asked only to react to decisions already made or treated as research subjects rather than genuine partners. This can lead to studies that overlook practical barriers, measure outcomes that matter less to people, or produce findings that are difficult to use in everyday care.
The Patient Leadership in Research program helps change this in two ways: by training people with lived experience to collaborate confidently and constructively with research teams, and by connecting research projects to our trained collaborators.
What the PLIR program involves
PLIR participants join live online seminars and learn with facilitators, guest contributors and peers. Sessions use discussion, visual roadmaps, case studies and role play to make research concepts understood. Participants learn how to contribute their expertise, ask constructive questions, identify tokenistic engagement and understand the responsibilities shared by collaborators and research teams.
You can expect:
PLIR Course Requirements
Use the list below to prepare any supporting documents prior to submitting your application
Researchers must provide information about their project and how patient-collaborators will be involved. WSCN reviews the request for program fit before considering introductions, and may request additional information. When WSCN identifies a good fit, it shares the opportunity with PLIR graduates who may opt in to participate in the project.
When submitting a request for patient collaborators on a project please ensure the following is included:
Partnership, privacy and participant responsibilities
- PLIR trains and supports research collaborators. It is NOT a clinical service, a treatment-education program or a clinical-trial recruitment service.
- Participation in the PLIR course does not create an employment, academic, clinical or guaranteed research relationship with WSCN.
- Participants and researchers must communicate respectfully and follow the appropriate WSCN participation agreements.
- Researchers are responsible for project-specific ethics, institutional review, data protection, safeguarding and professional obligations.