We heard that building healthy productive relationships between patients and researchers requires ongoing efforts by all partners over the life of a project, and ideally starts with discussions about new project ideas. But there is great variability in how and when partnerships emerge, and most important is meaningful engagement with positive relationships at the core of people’s experiences as partners. In this topic page, we present what researchers and patients told us about their experiences with developing partnership relationships. To read more about how researchers have engaged patients as partners in research, you can visit Developing Partnerships.
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When partnerships are being formed, patients and researchers spoke about the need to build trust so that all individuals feel comfortable with each other and the decisions being made within the team. Both patients and researchers suggested that researchers avoid acting like experts about patient matters and treat everyone as though they are on the same page.
Patient partners in Esther’s projects help determine project outcomes that are meaningful to patients
And, I remember there was something that was very shocking to me that I never even considered, because, I just don’t live that life. And, then, I made sure that I would then include those into my research questions. So, since then, I’ve now developed a research team. Tomorrow we […]
However, building trust in patient-researcher partnerships can be challenging if patients and researchers have not had a chance to connect and get to know each other beforehand.
Connecting with patients and learning more about one another has been helpful for Dawn
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 […]
Meeting face-to-face at the beginning was important for Maureen to make a connection
Right, so having – like meeting the researcher, like the lead researcher and really feeling that I could work with that person was really important to me. So a face-to-face meeting where the person really explained to me what it is that they want to do and connecting with me […]
Patients and researchers told us that building trust also involves researchers letting the patient voice be heard. Some patients mentioned that they had a positive partnership experience when they felt they were being listened to by researchers.
Karen feels that patient partners should have a forum to share their illness experiences
The other thing about personal interest is, sometimes you come to the table and you have some undealt with issues that are around the subject that’s being discussed. And, I think, people need to be given time to, at the beginning of that, to express that. If you don’t, I […]
Several people we spoke to noted that researchers and patients should expect relationship building to take time. For example, one researcher discussed how people come together as a team over time as they become more comfortable with each other.
People need time to become comfortable in the partnership, suggests Nicolas
So these people started off like that and then they said you know, the first meetings with the research team are very difficult. Researchers are on one side, patients are on the other side. And researchers, when you ask them a question, they’re used to being quick about things, so […]
Important qualities for relationship-building
Both patients and researchers mentioned the following qualities that they feel are important for building a strong relationship between patients and researchers partnering in research:
Be flexible – Although researchers have a specific project plan and timeline in mind, they may need to be flexible and adaptable when working with patient partners or community members.
When engaging community partners, Wendy says to expect that timelines may not go as planned
Never be an expert, at least never say that you know what’s best for the communities … unless you’re an indigenous researcher and then you can have that conversation. But I think that that’s part of the building trust as well is that people need to know that you really […]
Be transparent – Many people discussed how important communication is for relationship building, and that expectations on both sides should be clear to patients and researchers.
Patients and researchers need to be honest with each other about expectations suggests Zarah
Oh my gosh, every day [laughs] I feel like I learn something new, which is why I love it so much. And I always say my best days are the days where I actually get to sit down with patient partners and talk to them and hear about their experiences […]
Be approachable – Patients used words such as approachable, natural, and relaxed to describe qualities in a researcher that would make them feel more comfortable when interacting with the researcher (e.g., feeling comfortable speaking up at a team meeting or asking questions about the project for clarification).
Where Linda had pleasant interactions with researchers, this led to positive partnership experiences
So there’s – there has been a lot of different groups now, and so at this point, I mean, it’s – sometimes it’s meeting old friends when I start a new project, which is lovely, including people in different parts of Canada, and from Ontario, which is usually a big […]
One caregiver mentioned that they were made to feel a part of the team. Marc said “So, not only did we have the impression that we were part of the team, but it was more than an impression, we were really the focus of… And we were feeling the sincerity of the people involved, the different professionals, to get the essence of what we are as caregivers, what we think is important. So, this is an involvement. But with the same university, a researcher has developed an information video, that is called educational video.”
Be respectful – Patients discussed that it was important for researchers to respect their time and contributions to the partnership (read more in Valuing Contributions), but that it’s also important for patients to respect researchers’ expectations and goals for the project.
Mutual respect was important for building trust between Julie and a researcher
You know what? Building trust came through conversations and it came through mutual respect and that mutual respect built about me sharing my experiences and this researcher being open about his experiences, him being open about what he was interested in investigating but also me being able to share with […]
Sustainability of relationships
We also had discussions with the people we interviewed about how to sustain relationships throughout the partnership. Both patients and researchers discussed that researchers should have a continuous presence throughout the partnership to build trust and sustain the relationship over time.
In Indigenous communities, Wendy feels that having a continuous and local presence is necessary
It takes a long time and it also takes presence. It takes presence in the community as well as it’s something that once the trust – it’s always on a continuum and it’s always part of the journey and the trust is always revisited, every time. It’s not – you […]
As well, many people mentioned that researchers should ensure that there are many points of contact throughout the project to check-in with patient partners and provide updates.
Nicole suggests having a team lead to act as the point person for patient partners
We had like what we called a Kick-off Meeting where all the stakeholders who were involved in the [mute] got together to kind of like celebrate it being installed and to plan the next steps. And so we invited our patient partners to that as well, and made sure to introduce […]
Researchers should check-in with patients and ask how they are doing, suggests Claire
I would have to say that skills and training are really key, interpersonal skills are particularly important because of the vulnerability that patients feel, and yeah, it’s – you feel very fragile, not all the time, but there are periods where, you know, where I was feeling unwell that I […]
Review date: 2022-03