Advice to Others

Yeah, I think — I don't know, just do it. [Laughs] And I think just view it as truly a partnership, to not view patient partners as like not researchers per se, or like as just a token patient partner, so that you can get a grant.

Well I think sometimes patients misunderstand their role in terms of research - they think it's going to be service that they'll receive. Like so the communication, like you have to be sure that you explain well what the role is and what the purpose is, and the fact that they're going to do a lot of waiting, you know that things - that research is a slow process.

Yeah, just involve patients every step of the way because there's an adage in community organising that's Nothing About Us Without Us. And I sincerely believe that it is a way to go forward in healthcare because if we're truly going to move towards personalised medicine, involving patients from day one is as personalised as it gets.

Yeah, first of all I think — I don't think patients should assume that they have complete, that they have complete authority over a project. Because while the patient voice is obviously important, you have to negotiate that with the research team. And so something that patients should not do is just have too much high expectations.

Interviewer: Do you have any advice or something that researchers who do want to if they’re getting started, that’s something they should never-

Okay. I… seem to be repetitive in this, but it’s about having the, being relaxed, being honest, having empathy, using just so that everybody involved is in a relaxed state to go forward, because you’re not going to get the right information or results or anything if anybody is uptight, so it’s about the right team. 

Interviewer:Anything researchers should never do?

So if you're curious and you're interested, go for it. Take the Patient Involved in Research course. It's a great start. Hopefully by then there's some boot camps. But you've got something, if there's an interest it means you have something to say. You're coming with experience whether a caregiver or a patient, right?

So for patients and caregivers, I would say that they should try it. They should just get involved and maybe start small and then see if it's something that they enjoy, because you don't have to start with participating from beginning to end in a project - you can start small.

Maybe the researchers have to hold some kind of community event, where you're going to explain in plain language what’s in it for us.

Who want to get involved? I would say nowadays social media, use the internet. If your loved one has a particular let's just say disability, or ailment, or kind of condition Google it and look how do I get involved with X organization? And then maybe keep calling the company or the organization say are you doing any type of research? How can I participate? Or even send them an email.

Yes, facilitate communication between all stakeholders. Make it easy, be ready, organize contact activities, things for us to get to know each other, and not just… so we can contact and have conversations one-on-one or in small groups. Webinars and you know, workshops are really great, but in a big group this is not where the most interesting discussions happen.