Medical research on a rare disease that Maureen was diagnosed with as a child, was sorely lacking
So my interest in patient engagement research comes from my own story. I was diagnosed with a rare disease when I was eight years old after four years of searching for answers, and I became involved with the first longitudinal study in my disease, so I was at the
So for me medical research is very important, it’s what saved my life, it’s what gives me – the results of it give me a quality of life that I really enjoy, and I have a lot of faith in medical research and in rare diseases, it’s something that’s very, very difficult so there’s a lot less research. So for 20 years there was no research in my condition. Once I reached adulthood the research stopped, and my health deteriorated tremendously, I was using a walker, I was pretty well house-bound. And just had a horrible life, and there was just no research being done, so a very ultra-rare disease and calling all over and there was no Internet then, trying to find researchers who would take it upon themselves to study what was happening to the kids that they had so well studied in childhood.
More from: Maureen
- 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