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.
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.
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.
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.
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.
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.
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.
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).
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.
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.
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.