Relationship Building

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


Feel free to jump to the following sections:
Building trust
Important qualities for relationship-building
Sustainability of relationships


Building trust

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.

Relationship building

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 are actually having our first large planning meeting.

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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.

Relationship building

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.

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Relationship building

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 in some way, is really important.

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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.

Relationship building

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 think, it sits in the room and it's like this silence in the corner that's causing a problem in open communication.

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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. 

Relationship building

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 they give you an answer in two seconds.

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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.

Relationship building

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 want to work with them to address the issues in their communities, so I think-. Another not to do ...

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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. 

Relationship building

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 and their stories.

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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). 

Relationship building

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 part of these groups, Princess Margaret, or Canadian Partnership Against Cancer (CPAC). So that’s really nice.

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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.


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.

Relationship building

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 don’t get to a place where we have trust now and now we can move forward, you’re always revisiting it.

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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. 

Relationship building

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.

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Relationship building

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 felt quite fragile. So, I think an appreciation of where patients are at.

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Last updated
2020-03
Review date
2022-03

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