Advice to Others
In this topic page, we discuss advice provided by patients and researchers for others who are interested, or already engaged in research partnerships. Advice from patients to researchers largely centered around soft skills, such as being genuinely open-minded and receptive to patients, but also included suggestions about how to find patients who would be interested in joining a research team. To read more about how researchers engaged with patients as partners in research, you can visit Developing Partnerships. Advice from researchers to patients was mainly about how to effectively communicate their experiences and perspectives with researchers. Overall, there were four kinds of advice mentioned by the people we interviewed:
- Advice related to ensuring clarity of roles and responsibilities within a partnership
- Descriptions of helpful character traits and attitudes
- Ways to find researchers or patients
- Advice to funding organizations or other administrative bodies
Feel free to jump to the following sections:
- Clarity of roles and responsibilities for partners
- Helpful character traits and attitudes
- How to find the right researchers or patients to be involved with
- Advice to funders
Clarity of roles and responsibilities for partners
Researchers should prioritize true partnerships and genuinely listen to patients suggests Nicole
Transcript
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. But I think […]
From Annette’s perspective, clarity of roles is really important
Transcript
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 […]
Maxime thinks researchers need to include patients every step of the way
Transcript
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 […]
Patient partners should be mindful of other voices on the team but also speak up to help resolve issues, recommends Maxime
Transcript
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 […]
Helpful character traits and attitudes
Not presuming they know what’s best for communities, is an important starting point for researchers says Wendy
Transcript
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- Oh never do, yes, never be an expert, at least never say that you know what’s best for the communities … unless you’re an Indigenous researcher and […]
Carol encourages researchers to be relaxed, honest and empathetic
Transcript
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, […]
Patients’ and caregivers’ stories can make a difference to doctors, physicians and researchers - John encourages the sharing of experiences
Transcript
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 […]
You can start small, suggested Maureen, to see if partnering in research is something you enjoy
Transcript
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 […]
How to find the right researchers or patients to be involved with
Amy suggests that researchers should consider holding a community event or using social media to reach out to patients
Transcript
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. Because I have heard, you know, at these National Paediatric Conferences, the researchers are somehow relieved or happy that, once you get the families involved in […]
Using social media and email to get involved can work, suggests Manda
Transcript
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 […]
Advice to funders
Funding organizations can do a better job of facilitating communication between stakeholders says David
Transcript
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 […]
Review date: 2022-03