The people we spoke to shared stories about their background and how they became involved in patient-researcher partnerships. In this topic page, we present what led patients and researchers to partner together, the types of roles patients had as partners, and how people prepared for their role in the partnership.
Feel free to jump to the following sections:
How did patients become involved as partners in research?
How did researchers become involved in patient-researcher partnerships?
How did patients and researchers prepare to work together in a research partnership?
How did patients become involved as partners in research?
One common path to involvement was where patients were already part of advocacy groups, enrolled as study participants in research, or were working or volunteering at healthcare organizations or associations. These types of opportunities often exposed patients to research and connected them with researchers and other patients involved in research projects, which eventually led to the transition into a patient partner role. Others were recruited by researchers as partners through different types of patient groups they belonged to, and some reached out directly to researchers out of curiosity or a desire to contribute.
Path to involvement
…It’s a long story with my experience. I mean, ultimately, I live with juvenile rheumatoid arthritis. I was diagnosed when I was fourteen years old. I probably had showed symptoms before that, but lived with the disease through, you know, a lot of tough times, there’s no doubt, right through high school. When you're fourteen, it’s just a hard age to begin with, right.
For other patients, they went out of their way to seek out opportunities to get involved in research and came across patient partners opportunities that were being advertised by researchers. To read more about how patients were engaged as partners in research, you can visit Developing Partnerships.
Path to involvement
So, I got involved with patient-oriented research, probably about four years ago. I can't even remember how it came by me. I think, I just saw, I do a lot of research on the internet anyway. I'm always looking to see what's out there. And, I think, I just saw them, the young group that was asking for a patient partner.
While sharing their stories with us, patients also described the different ways that they were involved as a patient partner in research. The following list below captures the types of roles and responsibilities described by patients. To read more about how patient partner roles were determined or negotiated, you can visit Role Determination.
- As a co-investigator on research projects and involved throughout the project lifespan
- As a patient advisor on research projects, for example:
- Helped with setting research priorities/objectives with researcher/research team
- Reviewing project materials (e.g., consent forms)
- Contributed to literature reviews for grants or publications
- Engaged with the community; became a liaison between researchers and community members
- Used patient or community networks to help with recruiting study participants
- Analyzed data and interpreted research findings
- Helped with distributing information about project findings, for example:
- Developing material using non-scientific terminology
- Co-presenting findings at a conference
Path to involvement
Rhene: Okay. So about six years ago we were asked to be in a health research project and our roles were as patient and caregiver. They seemed to be happy with what we did in this project, so as a consequence we were asked to take part in a much bigger research project that involved three teams, two countries and was to go for six years. Our part –
How did researchers become involved in patient-researcher partnerships?
Some researchers that we spoke with, told us that they felt that partnerships were inherent and sought out a role/opportunity that would facilitate opportunities for patient-researcher partnerships.
Path to Involvement
I work as the strategy patient-oriented research program facilitator, which is a mouthful, but essentially it means that I am lucky enough to work with the Ottawa Methods centre coordinating the support program on the ground here.
Path to involvement
So I got involved first in community-based research when I was doing my masters in social work. And it kind of started with me just knowing I didn’t want to do direct counselling work so I took a student placement at a community health centre where they did community based research.
Some of the researchers we spoke with had a clinical background and made a transition to include a research role in their career.
Path to involvement
Okay thank you, I’m a researcher and an Associate Professor at the University of Ottawa and the School of Nursing and I do patient orientated research predominantly with different indigenous communities now but my story starts back when I was a clinical nurse.
Path to involvement
So I'm a paediatric endocrinologist, I did my fellowship training in [name], in the United States. And while I was there I did some work in the paediatric obesity clinic. I had an interest in working with families who have children with obesity, clinically and from a research perspective.
For a select few, their own experience as a patient led them to get involved in research.
Path to involvement
I started my experience in a very positive way. I mean what that meant, the fact that we talked about it, was that my experience as a kidney and dialysis or a kidney patient was always surrounded by some sort of positive energy if you like, in the sense that we embraced the treatments that came with it whether it was pills that we had to take or dialysis that we had to perform.
Path to involvement
Okay, so, actually, with one research project, which was to do with cancer symptom management, I participated – I actually had three roles, and my first role was as a healthcare administrator and as a decision-maker. So, I’m a senior healthcare leader.
How did patients and researchers prepare to work together in a research partnership?
We asked both patients and researchers if they were provided with, or had sought out, any training prior to becoming involved in a patient-researcher partnership. The following are a few examples of training opportunities mentioned by patients and researchers:
- Onboarding processes that included training led by either the research team or organization (e.g., hospital) (patients only)
- Graduate school courses (researchers only)
- Partners in Research (PIR) course offered by St. Michael’s Hospital
- Training opportunities listed on the Ontario Strategy for Patient-Oriented Research (SPOR) Support Unit website
- Virtual Masterclass offered by McMaster Health Forum
- Attending conference workshops
- Networking and learning from others
Please refer to Resources for a full list of training and resources available.
In some cases, patients did not receive any training by the research team, and similarly, some researchers did not have any prior training to help guide the partnership process. In these cases, patients and researchers had to learn while working together. For a select few patients, they helped develop training material for other patients that might be interested in patient-researcher partnerships. For example, one patient mentioned that she is helping with the development of training videos to be made available for online.
Path to involvement
So, but now, as I was saying, we are in the process of actually working on and creating some training videos, so that other people who may want to join the drug policy research network committee, or might want to be involved in patient research on their own in some other way.
Another patient mentioned that she was asked to speak during conference presentations to highlight how patient advocates and partners can communicate with policy makers. Laurie said:
“So I spoke a few times and tried to show how patients – you know, sometimes people would just show it as, you know, do storytelling about how relevant, or what was the importance of this topic to people living with arthritis. But you know, through some of the talks, we also tried to show how patients were involved in advocacy and kind of showing how patients go from working as partners in research, to trying to communicate it to policy-makers and these sorts of things.”