Maureen feels that opportunities for patients to be involved as participants and partners is important, particularly in the case of rare disease
Transcript
We want to make sure that, especially in rare diseases where we’re working from a small pool, we want to make sure that we don’t turn the trend around and we still – but I think when you have patient partners, well the studies have shown that your recruitment is often better – you often recruit more people. So there’s a very big difference. So when you’re participating as a subject or as a patient participant, which is better term, you’re bound to whatever has been decided and you can’t make changes. If you don’t like the way that it’s happened, they can’t change a protocol once they’ve submitted it. So if you say well coming in every day for blood-work is draining on me – you have two choices, you can quit the program, quit the research, or you can just suck it up and continue.
So and your contribution is very important because you’re contributing to research but in a different way, and the system only works when we have both of those groups. Hopefully, if you’re engaging patients in the research, and you’re looking at what you’re asking of the patients, they are more able to say well you know that’s not reasonable. If this person has mobility issues and you’re asking them to travel an hour a week to get to that appointment, you know you may be better to send a nurse to their home or something. So hopefully that they work hand-in-hand, that we make the experience of the participants better and more realistic by being engaged at that stage. So it really is – I think it’s a win-win situation that way.
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- 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