Dawn is a professor in a School of Nursing and her research focuses on understanding and assessing how useful knowledge translation interventions are for patients. She actively encourages her research teams, including student trainees, to invite patients and caregivers to participate in research and KT activities as knowledge users and in efforts to encourage shared decision-making. Dawn’s experiences with patient/caregiver-research partnerships have been positive. She believes that patients and caregivers offer valuable insights into the workings of the healthcare system that researchers may not have thought of when project planning. Dawn finds it challenging to obtain research funding for the initial planning stage, which limits the team’s ability to come together to discuss ideas for a project including researchers, patients and caregivers. Nevertheless, she advocates for researchers to include patients/caregivers as partners early on in project planning given her belief that learning how to establish effective research partnerships and teams should be part of a researchers’ learning process.
So for patient engagement, I actually like the Carman framework that is about the different levels of patient engagement. And when I re-wrote the framework, I actually added a line for - as part of a research team, where if that's full partnership, they would actually be a member of the research team. And so I think about there being various levels of engagement within the health system, individual decision-making, organizational levels, policy levels, as part of the research team, and then strengths of engagement meaning that there could be a low level of engagement where you consult the patients around what would be the key research questions that we need to move forward with, all the way to full partnership where they're part of the research team in their role as the patient on the team.
So we recruit patients and caregivers by word of mouth, among the current team members. So depending on which team I'm working on, we talk about is anyone aware of a patient or caregiver that would be good to bring onto our team? And usually it tends to be more the clinicians that have a better sense of who could be brought onto the team. Another way that we've done it in the past is that we've also gone to support groups for a specific type of diagnosis and we then look at support group leaders to find out through the support groups if there's someone that can participate on the team.
So as I just mentioned in my previous comment, I think having patients and caregivers involved on the team helped us sort of ground the projects in a realistic perspective from their views, not just from ours as researchers or as healthcare professionals that were also on the team. It helps us reaffirm why we're doing the project and the perspectives of patients and family.
I also think that having her on the project also brought up issues that we hadn't thought about and, as I mentioned, reminded us that we need to pay attention to not just the patients with cancer but also the caregivers involved in their symptom management.
So the most challenging is, in a couple of situations I haven't known the patient or family member going into the group, and so I haven't pre-established a relationship myself as the Principal Investigator with that person. And so in the one instance the actual patient actually - or it was actually a family member provided an opportunity for me to have a one-on-one meeting with the person as part of the decision-making process. And it was really helpful because I could then understand why that family member really wanted to be part of the process and she could also learn a little bit more about me. So it was very much a one-on-one meeting where we could establish our relationship together.
In the other situation where it didn't work so well is when I never met the person face-to-face and I never felt very much connection with that person, and the person also had a lot of other extenuating circumstances that detracted from her ability to participate as a patient on the team. And so it isn't always a positive experience.
The only skill they need is to be a patient. Essentially every perspective, I feel every perspective as a patient needs to be captured and needs to be respected, and so yeah, it's not really a skill, but being a patient and just wanting to make a change in your community in the way the healthcare system works.
Certainly communication, being able to express your opinion, good listening skills, reacting to people. But for me the key skill is to be able to express your opinion and to listen to others and reflect in what they say in a pretty concise format. Now you’re giving me lots of opportunity to talk here, but when you only have an hour or an hour and a half with a large group of people, you need to be very concise. You need to be able to express yourself in a positive way even if you’ve had a bad experience. It’s not helpful to anybody to air that, so to try to turn it into positive because that’s how we can make change.
The skills that patients need is really the experience in the system, where they can talk about their experience as well as their perspective of the experience of other patients. I think that when we sometimes run into problems is when the patients don't feel very comfortable to be part of the team, or they have other priorities in their lives, or other issues that are influencing their ability to participate. I think that in the research environment, we tend to be more factual and to the point when we have meetings and so for some patients they might feel like it's very business-like and so helping them understand how they can participate on the team. Sometimes I need to in meetings open the door for them to check-in with them during a meeting even, to ask if they have suggestions. So I think there's a number of different elements that we can - or things that we can do as researchers to help make the process easier for us as a research team, and for patients and family members on the team.
For training of researchers and patients and family to be as part of the research team, I think that, if I'm thinking about the patient and family first, I think there needs to be some explanation around how the whole research process works. And discussion around what their role would be and sort of the different elements of the - how the study will be rolled out. I think there also needs to be discussion around the influence of funding on the ability to truly conduct a study and what the limitations are when you have a much smaller budget, which is more common these days. So I think from a patient perspective, and family, we need to help prepare them for what, how does it work and what's their role. And also what are some of the challenges of being a patient on the team. And as a researcher I think we need to be thinking about how do we help prepare researchers to be able to work with patients and families as part of the team, and equally valuing their perspective as they do other people on the team? Because I think that there is sometimes a hierarchy in terms of whose opinion counts most and patients and families may not be considered to be part of that hierarchy of whose voice is heard the most, or respected the most.