In this topic page, we summarize the sorts of connections that participants made through their involvement in patient-researcher partnerships and what they learned from the experience. Participants spoke about the personal and professional relationships they developed and the different learning opportunities provided as a result of the partnership.
Please feel free to jump to the following sections:
- Forming relationships and building connections
- Patient partners and researchers learned about others’ health experiences
- ‘Learning as you go’ is how patients and researchers described the partnership process
- Patient partners’ personal growth and learnings from the partnership experience
Forming relationships and building connections
When patients and researchers were asked about the most positive aspects of the partnership experience, many responded by highlighting the different friendships and relationships that were formed. For example, one patient and caregiver couple told us about their new friendships with the researchers on the team and that these relationships contributed to their continued involvement as partners in research.
Learning From Others - Frank & Rhene
Rhene: Actually, yes. It’s been very interesting. We met –
Frank: - Interesting.
Rhene: - some interesting people. Part of the reason why we kept on with it is that you make friends with the people. You’re working with them and get to know them and …
As well, another caregiver told us how their relationship with other caregiver partners evolved from being acquaintances to becoming friends after engaging with each other in an online community.
Learning From Others - Manda
Interviewer: And so what kind of relationships have you had with the researchers that you've been working with?
As well, some patient partners said they appreciated having the opportunity to connect with, and learn from, various stakeholders, such as organizations and well known researchers. For example Karen said, “The opportunities it gave me to both connect in different ways, to different organizations, to different conferences. That it actually opened doors I was looking to open, that had nothing to do with them. That they actually were able to help me in that way.”
Another patient partner told us how much they enjoyed the exchange of ideas across various stakeholders they interacted with throughout the partnership.
Learning From Others - Louise
I think it's the exchange of ideas with a multitude of stakeholders, and even other patient groups' stakeholders that have different diverse perspectives. I love that exchange of ideas. And in general, oh, you know, it's always exceptions to every generality, I find it really - those relationships are really exciting and very respectful and fun.
Patient partners and researchers learned about others’ health experiences
Both patient partners and researchers mentioned that one impact of being in a patient-researcher partnership was learning about peoples’ experience with health and illness. From the patient partner perspective, they had an opportunity to hear a variety of stories and experiences from other partners. For example, Carol said, “I like participating, because I also learn. I also learn about other people or ways or – life is a never ending [learn]. My dad always said, learn something new every day, even if it’s a word, you know?”
For some, it was also comforting to hear from other people who were going through similar challenges as them. For example, Rhene said, “We went to a patient caregiver conference and they put us with three professional people and three patient caregiver type people and wanted to know what our problems were. This was very helpful because we found that a lot of the other patient caregivers were having exactly the same problems that we were having.”
From the researchers’ perspective, some reflected on the importance of learning from patient experiences and how that can help guide the research project.
Learning From Other - Nicolas
And there is a very big tradition in education with experiential knowledge, or experience in education.
Learning From Others - Claire
Oh my gosh, yeah, absolutely, you need to engage patients. Like, they bring expertise, they bring, you know, living with illness, living with treatment, you just – you cannot get that out of a textbook.
‘Learning as you go’ is how patients and researchers described the partnership process
We heard from many people that learned how to navigate the partnership process as they lived through the experience, leveraging what they learned from fellow colleagues and/or peers. For example, Annette said, “We're learning as we go - like there's really not a lot of frameworks for networks, like this is all new. So it's - you know we learn by trying different things and having very committed people and having an amazing citizen engagement council and great, great parents that are really committed and have great experiences to share, and are honest.”
Learning From Others - David
Interviewer: And for patients, do you offer any training to patients as well or participants?
David also described another example where receiving constructive criticism from a reviewer was a learning experience. David reflected about how a reviewers’ feedback helped him reflect on how to better communicate his patient engagement efforts in publication: “When you do patient engagement in research, this whole idea of participation in research or being engaged in research is really difficult. We had the reviewer for an article really start explaining to us in the reviewing, in his review of our article. I had to re-write it. It was refused, but I had major revisions proposed, so the reviewer was so nice.”
Patient partners’ personal growth and learnings from the partnership experience
Patient partners also reflected on individual learnings they gained from their experience as partners in research. One individual described how they learned that there was much more opportunity to get involved in research as a citizen partner than they had expected going into the partnership.
Learning From Others - Suzanne
I think I was expecting that being involved as a research partner, as a patient research partner or a citizen research partner, would probably be reading over some statistics and saying, yeah okay, that makes sense to me, I understand this, that you know, there’s nothing wrong here that I as a citizen could point out, and thinking you then signed off.
Another patient partner described how they felt satisfaction in finding meaningful work that they could contribute to as a patient partner after retirement.
Learning From Others - Cathy
I think I’ve said it before about feeling that you’re making a difference, feeling that what you have to say is important, but also for me, personally as I’m aging, kind of a sense of self-satisfaction. I can still function at an intellectual level. I can still learn things.
Another patient partner reflected about how their personal experience fits into the larger picture when thinking about the cancer experience.
Learning From Others - Linda
How it has kind of changed me? It – well, I – it certainly helped me think about, from a personal point of view, what’s important to me, going forward, how I think about the cancer experience, how I think about cancer. But bigger – sort of a bigger picture than that, what really I’ve learned, is how to place this in the big picture, because – so I’ve come into contact with a lot of patients.