We asked participants to describe how being involved in a patient-researcher partnership had an impact on them personally and how they thought partnerships can impact patient care and experiences more generally. In this topic page, we highlight the types of impacts discussed by both researchers and patient partners. On a personal level, many participants discussed various opportunities for personal growth and how patient-researcher partnerships can influence changes in practice, with positive change for patient care and experience.
Feel free to jump to the following sections:
- Patient-researcher partnerships provide a new perspective
- Patient partners gained new insights, knowledge and skills
- Developing relationships and building trust with Indigenous communities
- Building teams and networks to support patient-researcher partnerships
- Patient involvement as partners in research can influence changes in practice
Patient-researcher partnerships provide a new perspective
Both researchers and patient partners discussed the various ways in which they felt that partnering together provided new perspectives that they had not considered previously. For example, many researchers reflected that after hearing from their patient partners about their illness experiences, they had a better understanding of the patient population they hoped to positively impact with their work. Furthermore, some researchers discussed how their experience working with patient partners helped them see the value of patient contributions to research projects.
Improving Patient Care and Experiences
Children and youth, that’s where I work. Through the work that we’ve been doing, we have come to a realization that the frameworks that people generally use in relation to children and youth justify children and youth’s exclusion. Because most people are operating on very outdated models of child development, whereby children’s differences from adults are generally interpreted as deficiencies.
Improving Patient Care and Experiences
Just a real understanding of the value, and that has only come with experience. I don’t think anybody could have probably told me that, but seeing, not just understanding, but actually seeing how they can shape a project for the better. That has definitely changed.
From the patient partner perspective, many told us that their engagement in research gave them an insider look into the world of researchers. Some mentioned that they had a better understanding of the research process and the challenges that researchers face in moving projects forward.
Improving Patient Care and Experiences
I think then you start to realize that - so for me what it does, is it creates empathy for the researchers.
One caregiver discussed that they came to realize that there are many researchers who are passionate about their chosen field of work and many opportunities for researchers and patients to partner together to improve patient care and experience.
Improving Patient Care and Experiences
It's opened my eyes to see that there are people who really love what they do in terms of they might not be affected at all by an ailment, or by a disability but yet they devote their whole lives to researching, and they want to help families.
Patient partners gained new insights, knowledge and skills
Many patient partners talked about the different learning opportunities that came out of their experience of being involved with research. Some examples included: learning how to navigate the healthcare system; learning new skills (e.g., public speaking); feeling more confident about voicing their opinion; understanding their illness better; and, seeing how useful sharing their personal experience can be for others.
Improving Patient Care and Experiences
I'm much more involved in terms of what's going on with me and what's happening and where's the process? And also for my wife and family and - right? So I get more involved in that process.
Interviewer: What does that mean? Do you challenging -
Improving Patient Care and Experiences
Like this is my field of study, health and health policy — and so I found it rewar
Improving Patient Care and Experiences
People in general, researchers, doctors, etc., were very accommodating to me. They didn’t have the information either, I was like, oh, this is special. It was basically that one time. That wasn’t too long ago, maybe two years ago, but no, I’ve always been approached with respect and people have valued my input, my information, my history. And uh, so, yeah.
Developing relationships and building trust with Indigenous communities
Some researchers reflected on their experience partnering with Indigenous communities and shared how they have felt personally impacted by these relationships. These researchers spoke about how much they have learned about the work that needs to be done to build trust with Indigenous communities and develop research projects that are relevant to community needs.
Improving Patient Care and Experiences
A lot has changed for me both from how I see the clinical world and the health services that we provided as western colonisers to the indigenous people but also how I see research informing their health services and we – western research has moved ahead so rapidly, so rigorously, so strongly and it’s made so many leaps in knowledge.
Improving Patient Care and Experiences
I've always done community partnered work and that's because I come from a profession that has, as its theoretical foundations, client-centred care. So I would say that working in partnerships has been deeply satisfying in that it's sort of like my life's work, in a sense.
Building teams and networks to support patient-researcher partnerships
Both researchers and patient partners talked about the important role that partnerships have in the creation of new networks and opportunities contributing to further support for patient-oriented research. Building networks can lead to more involvement of patient partners in research, connect individuals who may have never crossed paths otherwise, and contribute to research areas where patient engagement is less prominent.
Improving Patient Care and Experiences
But we're trying to help - by helping support researchers doing their research using a patient-oriented research approach, we're more likely to influence the way they do research in the future.
Patient involvement as partners in research can influence changes in practice
Many patient partners and researchers spoke about how including the patient partner perspective in projects can contribute to change in health care research, policy and/or delivery. We heard many examples from patient partners regarding how their contributions to research will have a positive impact on improving patient care and experience.
Improving Patient Care and Experiences
I think we have a lot of assumptions as researchers, and certainly, my experience as a patient has challenged some of those assumptions, like, you know, thinking that perhaps, “This is the way we’re going to do it,” and being respectful of, “Well, actually, that may not work from a patient perspective.” And, “Well, is that actually an important question that the patient has?” So, you will never
Improving Patient Care and Experiences
My feeling as a patient collaborator is that you’re making a difference in decision-making and treatment plans and public policy. You think, like I’m just one person and I don’t have a medical background and how can I be doing that? But by getting involved in this you really do feel like you are involved in it.
Researchers also shared examples where patient partner feedback was used to help refine questionnaires, screening tools, communication material, and/or program development.
Improving Patient Care and Experiences
And based on feedback that we received from our families we're launching this Fall a hands-on experimental food skills program, which will be at a community kitchen. It's got industrial equipment, it's at a food bank to get them exposure to how to actually use equipment, how to prepare food.