Challenging Experiences

During the interviews, we heard from patient partners and researchers about the benefits and joys of partnerships in research, but also about the different challenges they faced in working together. We grouped these challenges under the following seven headings, and provide a summary of what we heard for each topic below:

• Engaging diverse patient partners in research
• The research process does not always move forward as planned
• Navigating partnerships for the first time
• False assumptions made about patient partners
• Patient partners feeling their voices are not heard or respected
• Poor communication between patient partners and researchers
• Navigating sensitive conversations
• Power imbalances within a partnership

Despite these important challenges, patient and researcher partners also shared their perspectives on how to handle these issues to help keep moving forward.

Engaging diverse patient partners in research

We heard from many people we interviewed about the challenges in achieving diversity amongst the patients they partnered with, and the factors or barriers to be addressed. Some examples included: the lack of funding to fairly compensate patient partners for their time or to support engagement (e.g., interpreters for the deaf, language translation, covering daycare costs), lack of flexibility in timing or arrangements to respond to patient preferences, and/or certain accommodations for those too ill to engage when they are able.

One researcher also describes why some individuals might not feel comfortable engaging in patient-researcher partnerships: “ So it was interesting for me to learn, and hearing about – talking to the woman who was doing the research, that in the US with the particular immigration policies and certainly with the current administration now, that a lot of the hospitals that have a large Hispanic community nearby, they choose not to meet in the hospital, because the people are afraid they might be questioned about their citizenship.”

To read more reflections about this topic, you can visit the topic page Diversity.

The research process does not always move forward as planned

We heard from many researchers that you should expect research projects to take longer when you engage patient partners in research and the process may not always move forward as initially planned. For example, one researcher described how it took time for patient partners to feel comfortable and provide feedback, resulting in changes being made to a study questionnaire: “What happened, is that the study is not over yet. It was supposed to last two years. It’s not… we’re not done re-creating this questionnaire. We’re still working on it, it’s almost done. The thing is, it raised… patient engagement and other things happening around the study raised all kinds of questions, all kinds of new concerns for the researchers, so it got delayed and I think it happened a lot in patient engagement is that it raises new things that you hadn’t seen before and what you thought was simple, gets a little bit more complicated, you know, the issues change and everything.

Another researcher shared a story where there was a misunderstanding about a scheduled meeting with community partners.

Navigating partnerships for the first time

Both patient partners and researchers talked about the challenges of being involved in a patient-researcher partnership when you are less experienced. From the researcher perspective, there is very little guidance for researchers who are new to patient engagement, particularly if you are a trainee or early career researcher. For example, one researcher highlighted how it can be difficult to engage patient partners in your research if you lack the time, funding, and connections.

Some researchers expressed that they worried about ‘doing it right’ when discussing patient engagement. For example, researchers wondered if they respond appropriately to patient partner feedback, if they compensate patient partners fairly, and how they should engage patient partners throughout the research project. One researcher shared their concerns that researchers may be hesitant to engage patient partners in the future if their first experience was not a positive one.

From the patient partner perspective, there were many challenges with getting involved as a patient partner. For example, some patient partners discussed how it can be difficult to follow conversations with all the research jargon or know when to jump in and speak up during team meetings.

False assumptions made about patient partners

Both patient partners and researchers discussed how there can be unfair assumptions made about patient partners. For example, researchers have been known to make false assumptions about patients’ motivations to engage in research or underestimate their understanding of health and illness.

Louise shared with us that her motivations to be involved in research have been misunderstood and this is a common challenge for patients who want to engage in research: “And if – you know, someone like me, if I get engaged with some research project and people decide that, well she just wants the research to look like that, or she thinks it means that because of where she got her funding, that’s tragic. And I don’t want that. You know, that’s not good for patients. I don’t want to do things that aren’t good for patients. But I’m being – we’re all being forced into that kind of a box. So that to me is one of the most profound problems, I think, that we have right now as patient groups.”

Patient partners feeling their voices are not heard or respected

Some patient partners told us that they did not always feel that their time was respected and/or that their feedback was being considered by researchers. For example, some patient partners perceived that their feedback on project activities were ignored by researchers, considered irrelevant, or unintentionally overlooked.

Some patient partners also discussed that they didn’t feel like they were able to contribute in a meaningful way because they were given roles that felt tokenistic (e.g., taking meeting notes, scheduling meetings).

Poor communication between patient partners and researchers

Issues around communication were often brought up by patient partners in various contexts. Patient partners identified areas where they felt that researcher(s) could have communicated more clearly:

• Discussions around authorship
• The role of the patient partner and how they can contribute
• Providing project updates
• Transparency about team membership and who will be attending meetings
• What can be shared publicly about the project with others

Cathy discusses how she was uncertain about what she could share more publicly about the research project: “Probably the biggest thing for me in the beginning was when I signed that confidentiality agreement and I was so afraid I was going to say something and I’d be in trouble or I’d breach confidentiality or I’d affect the research, and I’m much more relaxed about that now because I just finish the project and like I’ve promised to them and they ask, I delete anything that I have from them, but I can talk knowledgeably about what they do and what is already online, what has been posted publicly.”

Navigating sensitive conversations

A few researchers talked about feeling unprepared to handle conversations that arose when patient partners shared personal and emotional stories. They suggested that training and resources are needed to support researchers in navigating sensitive conversations. Nevertheless, these researchers felt that it is important to hear patients’ stories and listen to their challenges when in the process of building relationships and engaging them in co-design activities.

From the patient partner perspective, we heard that many patient partners did not always feel that the researchers they worked with acted with empathy, while acknowledging that this was not perceived to be intentional. Many patient partners discussed that researchers need to acknowledge that emotions and feelings may arise for patients while they participate as a partner in research. For example, Karen mentioned the following challenge she experienced as a patient partner: “I think, was just the total disrespect of me, as a person. And, not really seeing me as an equal person at the table. And, not considering some of the difficulties I was faced with and, being able to attend that.”

Patient partners suggested that researchers should create a space for patients to feel comfortable in sharing their personal stories or how they are feeling. For example, Amy says: “Yeah, things like that, that thankfully we don’t have to worry about; we only have to worry about that if someone has had a traumatic experience in the hospital, that they have allowed enough time and space for them to work through all their issues, so that they’re not coming to the table with an axe to grind. That they’re actually there to say, I don’t want this to happen to anyone else, and it’s just to move forward without a personal agenda, yeah.”

Power imbalances within a partnership

Some patient partners and researchers also mentioned that there can be power imbalances within the partnership. Some patient partners mentioned that they felt intimidated by researchers for various reasons, such as feeling that they lacked the skills needed to participate in research or feeling a divide between researchers and patient partners during a meeting.

One researcher emphasized the importance for researchers to consider how they are perceived by patient partners, especially when asking patient partners to be involved in co-designing a research project. As Gillian said: “ One thing that we’ve noticed at our co-design events is a tendency, because of power imbalances, for people to want to defer to the highest authority in the room. We as researchers have to make sure that we’re not seen in that light, we don’t see ourselves in that light at all but other people might, particularly when you come across an authority issue. People may turn to us and say well, what does the literature say or what would you recommend.”

In this section, we have presented the many different challenges faced by both patient partners and researchers in patient-researcher partnerships; however, we want to highlight that most of the people we interviewed looked beyond the challenges as failures and described instances where there was reflection amongst team members and opportunities identified for improvement as well as boundaries to be pushed.

For example, as Janet stated: “So I was lucky in that instance to have someone who was able to say ‘yes, it’s right, it’s okay, you can push the rules and it’s the right thing to do.’ So I try to share that message and encourage people to not worry about challenging things just because it’s the way it’s always been done.”

Likewise, Karen (patient partner) found opportunities to challenge the status quo: “ You know, so, I think researchers have to be careful. I think they want to have the ultimate, ‘Oh, this was so great. We did everything right.’ But, no-one does everything right. So, “yeah, you’ve done all these good things, but, let’s look at places where you missed, you missed the boat, you know.”