Maureen is a retired teacher who has been actively involved as a patient advisor on policy advisory committees for the last 18 years, and in recent years she has worked closely with researchers as a patient partner on various projects.Maureen was diagnosed with a rare childhood disease at a young age and was enrolled early on as a study participant in a long-term project specific to her disease. She participated in several studies over the years, and she credits this experience to saving and improving her life. Maureen felt highly motivated to become a patient partner in medical research projects because of her belief in what medical research can do for improving patients’ lives. In learning from her experiences, she believes that there are tales that must be dispelled about patient-oriented research. First, patients do not need to have a scientific background to contribute meaningfully. Second, patients do not necessarily need to be diagnosed with the same disease being studied in the project, as their own lived experience may relate well to the experiences of others. Last, patients do not need to be involved throughout the whole research process, and researchers should make it clear that there are many entry (and exit) points throughout the research life cycle for patients to get involved as a partner. Maureen is optimistic that the number and variation amongst of research partners will broaden if these myths are dispelled.
- Relationship building – MaureenMeeting face-to-face at the beginning was important for Maureen to make a connection
- Supports Needed – Maureen
- Supports needed – MaureenFor Maureen, different levels of training, peer-to-peer learning, and training responsive to patients’ needs are important.
- Looking forward – MaureenMore diversity is needed in the kind of patients involved in research suggests Maureen
- Diversity – Maureen (2)Engagement is here to stay, but Maureen acknowledges some growing pains to work through as yet.
- Diversity – MaureenMisconceptions about patient partnership, Maureen feels, might limit the types of patients who get involved
- Advice to others – MaureenYou can start small, suggested Maureen, to see if partnering in research is something you enjoy
- Skills for partnership – MaureenFor Maureen, it’s important for researchers to dispel myths about patients needing to have a scientific background to participate in research.
- Relationship building – Maureen (2)Meeting face-to-face at the beginning was important for Maureen to make a connection
- Role determination – MaureenMaureen worries about the professionalization of the patient partner role