David works at a hospital in a position where he helps to involve patients in research and in activities to improve care. For one project, David worked with his supervisor to develop a survey for HIV/AIDS patients that patients could fill out during their appointment to record any issues or concerns with their treatment. However, David felt that these patients should have an opportunity to voice their opinion about the value of the survey, and successfully applied for a grant to engage patients in the project. Since then, David and his team have learned a lot about the value of this approach and other researchers have also shown more interest in what the patients think and started to include patients in their work as well. David feels that this is all because of the excellent work of the patient committee. He was able to stimulate interest in patient engagement by creating lots of opportunities for patients and researchers to meet. David has also encouraged researchers to reflect carefully on the meaning of the results from projects where patients are more involved. As a social anthropologist, he is interested in what happens while patients are being in engaged and what people think about it. He also thinks that researchers who have more experience in patient partnerships should help to guide people with less experience.
Yes, facilitate communication between all stakeholders. Make it easy, be ready, organize contact activities, things for us to get to know each other, and not just… so we can contact and have conversations one-on-one or in small groups. Webinars and you know, workshops are really great, but in a big group this is not where the most interesting discussions happen. I have seen a lot of kind of hierarchies happen. When those workshops are done, when you’re 30 people trying to learn patient engagement, there’s a hierarchy that is being established. It’s the people who have the more equal and the better kind of partnership with their researchers and patients.
When you’re starting your project, to see this is really disappointing and you’re like, we’re not doing patient engagement because we don’t have a partnership, but the partnership is maybe six months down the road. How do you get there? This is where it’s important and you can’t discuss that in a big room setting with 30 people around you and where there’s one guy or one researcher that has a patient engagement or a super great partnership and then the hierarchy is established and whenever you raise your hand and you want to talk about your little committee, people say, “No, it’s not important.” It’s really to avoid those hierarchies between methods and approaches and generate those little settings where you can discuss openly, your experience. I think if they could manage to do something like this, that would be really valuable.
So, we decided to do two focus groups, one with men, one with women, and talking with people, some people said, “Well, you know what,” especially there were women saying, “I want to participate with women because I want to speak as a woman, but I wouldn’t want to be in the committee with men.” She was speaking French and English, but it was definitely her second language, she was like, coming from another country and she didn’t feel entitled or she didn’t feel safe being in a group on a long-term basis talking about HIV with men and with people in another language. I think for her, the opportunity of participating in a focus group There were also people that were like, “Well, I don’t really mind,” and there were people, like, “I really want to make this committee. I want to be there. This is really important for me.” So, I also considered that when people were like, “Yeah, the focus group is more what I would like to do. I don’t want to be involved in the long-term because I’m really busy,” or whatever.
I would also listen to that when I made the selection. It really felt well because we were looking… we wanted to have the four groups that are often referred to as the key populations of HIV in Quebec, so men who have sex with men, women, people from countries where HIV is endemic, and intravenous drug users…IV drug users.
Listening to the people, how they wanted to participate, etc., we ended up with a group where all those groups represented. We had very different experiences in the group. People were… some people were really involved. There was one person that had just been diagnosed a few months before and was still, “I don’t feel really comfortable about talking about my status, but maybe this group is going to help me talk a little bit more and accept the diagnosis, or my new status.” So, very different experiences. Some people were really knowledgeable about research, some people were not at all, and we were… that’s what we wanted. That’s what we imagined the committee to be.
As for the engagement thing, I think engagement is really difficult to… I also have problems with it and I’ve thought about it and patient engagement, we put them together and English grammar allows us to put them together, patient engagement. We tend to assume it’s a patient being engaged or patient engaging research and I never know, like patient engagement, is it also us as researchers or care providers or whatever, engaging patients? Initiating a dialogue or participating in dialogue in which we engage with patients and is it also patients engaging with us, in which direction does it go? I don’t think it’s that clear, or it should be in both directions, or whatever. But I think, you know just to give you an example, I think patients are engaged in research, in their own perspective, they’re engaged in research, even when they’re just filling out a survey and just participating in a study.
I think there is a part that is I’m engaging in my care because participating in this study will improve something or will give me more information or I will learn something new. They may have those hopes or those needs. So, I think patient engagement can happen in invisible ways. And then is it involvement or is it participation or… I don’t know. When you look at the Strategy for Patient-Oriented Research (SPOR) website, the supporting patient-oriented research, it’s like patient engagement is the active involvement of patients or other stakeholders in all different aspects of research and this is great, but you know, engagement and involvement they’re kind of synonymous, you know what is meaningful, what is authentic? I don’t know, I’m not super… I don’t have a clear answer.
I had never been involved in patient engagement before, so none of us; my supervisor, the other researchers, nobody had ever done… I had done some participatory work before with communities on different topics, but not patient engagement as such, so we really considered the website, read a little bit of articles about patient engagement and we went for what was the kind of more, let’s say, obvious, or the more doable, the viable to have a project. We decided to do a little committee of people living with HIV and consult them, so they would basically be there for researchers. When they would need to consult them, they would ask them questions based on their progress in the study in the project that they were doing.
We wanted a small group, so we started with 10 people living with Human Immunodeficiency Virus (HIV). Thinking back, well we wanted the group to be diverse, we wanted it to be small, but diverse, have different experiences of HIV, different experiences of care. Because the project was able adherence to the treatment and especially difficulties in adherence and taking the treatment, we wanted people who could have different kinds of difficulties. So, we thought 10 people could allow us this kind of diversity in terms of experiences, in terms of difficulties, and it was a small group, but I think in our head we were comparing it with research, because, well then, people in the research study, it’s just small sample. It’s not that small in certain quantitative studies, but still it’s small in most of the studies, but I think for committee, it’s a lot of people.
Listening to the people, how they wanted to participate, etc., we ended up with a group where all those groups represented. We had very different experiences in the group. People were… some people were really involved. There was one person that had just been diagnosed a few months before and was still, I don’t feel really comfortable about talking about my status, but maybe this group is going to help me talk a little bit more and accept the diagnosis, or my new status. So, very different experiences. Some people were really knowledgeable about research, some people were not at all, and we were… that’s what we wanted. That’s what we imagined the committee to be.
Interviewer: And for patients, do you offer any training to patients as well or participants?
For the moment, no because we’re working with patient that have kind of been trained by participating in the project, by being in the committee. What we noticed at the beginning in the very first meetings, we had the two focus groups, the two gender specific focus groups with men and with women, and then we started the project and we noticed that they needed to be a lot more trained than we thought. The training was kind of mutual. We had to learn to ask them questions and they had to learn to talk about their experience, feel safe. They had to learn what was adherence, what we talked about when we talked about adherence, and learned to talk about experience in a way that is useful for us. We kind of learned it all together; both me and the patients. These patients have been trained by practice and they’ve kind of trained me as well.
I think I was like, asking for change. At the same time, I think when opportunity showed… when there were opportunities, I made sure that these individual members, these individual patients, could meet some researchers, so they could talk for themselves, make a room for themselves, and I think slowly this idea of we give information and we receive another kind of information and this is improving our project, but the project never changed, slowly, in the head of the researchers, this changed.
It was, we need to create more partnerships, but it happened… I don’t know how it happened. It’s really difficult for me to say what exactly… I think it’s a whole social process and it’s like, research is also a social and cultural phenomenon and I’m still working on this, but I think it’s totally an outcome of working with our little group of patients. They radiated something beyond their little discussions and it’s just not the content of the discussion, it’s the medium.
The way the discussions were organized and everything, it caught people’s interest and they wanted to know more. They wanted to know more about what patient’s think, so they changed the way they do research to include more perspective of patients and be more interested in that. They were willing to collaborate as well, so when there were some individual members that could be grabbed and brought into the research team as collaborators and as partners, they were also willing to do that.
So, there was definitely this open mindedness on the part of researchers that made a big difference. Not only within our little research team, I think in the broader institution, in the circle where we work, a kind of a… researchers from the service for people living with HIV, they were willing to do that and they were ready to do that.
I think there was some also… some already started collaborating with community organizations. There was already a culture established around that, but patient engagement gave them new tools to work more directly with different people, different stakeholders. So they enjoyed that.