Supports Needed for Patients/Caregivers and Researchers
In this topic page, we describe how patients and researchers spoke about the types of support they found useful. Overall, participants felt that some kind of training was important both for patients and researchers. There were varied opinions however of what should be taught, how it should be taught, such as providing information, coaching or peer-to-peer training, and to what extent patients should in fact be trained.
Feel free to jump to the following sections:
For Maureen, different levels of training, peer-to-peer learning, and training responsive to patients’ needs are important.
Transcript
So getting the patient and the caregivers involved in the training, I think is of utmost importance. I think you need to know – you need to go out and find out what it is that people think or people would like to know – like what would be the […]
What should be taught
Participants suggested a wide range of topics they felt important to include in training initiatives. This included the explanation of research jargon, the research process (funding, grant writing, ethics, methods), information on how to get involved, and an orientation to the different roles and disciplines of those involved in research. Also mentioned, although less frequently, were subjects such as the background or rationale for a project, information on the healthcare system, the foundations of patient-oriented research (POR), and the rights of patients.
A master class that Karen attended used great games to address the jargon.
Transcript
And, so, they had games around the jargon. So, when you used too many like, initials and, you didn’t say what it was, you’d have to give a, they’d start off with so many tokens and, you’d have to turn them in, every time you said something without explaining what […]
The research process, as well as people’s roles and responsibilities, should be explained from the outset. Dawn thinks this would help prepare everyone for engagement.
Transcript
For training of researchers and patients and family to be as part of the research team, I think that, if I’m thinking about the patient and family first, I think there needs to be some explanation around how the whole research process works. And discussion around what their role would […]
There was also a great interest in learning more about the ‘how’ of patient engagement. Participants suggested possible training topics to include, such as ‘how does patient engagement happen?’, ‘how to best hold a meeting?’, ‘how does the collaborative process evolve?’, and ‘how to be constructive as a patient and researcher?’ In addition, there was interest in learning more about the value and application of certain interpersonal skills and attitudes such as being constructive, understanding and collaborative. These kinds of topics could be approached through other kinds of training formats such as coaching and peer-to-peer learning about best practices (what worked, what didn’t work, what (not) to do, etc.).
For Nicolas, there is a difference between training to inform and learning through continuous coaching.
Transcript
I’m in education, and I’m expert and I’m very picky about those things. You know, for me one of the debates that we had in the Strategy for Patient-Oriented Research (SPOR) committee, the committee for the foundational curriculum was that there was a view from the other members who said […]
Projects move forward more constructively, according to Linda, when patients receive coaching to help them understand their role and expectations.
Transcript
And I know that the Canadian – the Ontario patient and caregiver group, they give coaching to patients. I think it’s probably a good idea for the bigger projects. And certainly if there is an agenda, if you will, either specific, or just a broad agenda of what – for […]
Other valuable supports mentioned by participants included:
- face-to-face training to support better relationships between research participants
- starting the training at a level that is accessible/tailored
- having the research team provide the training
- bringing research partners together to discuss work priorities
- include written material
- to co-learn,
- to start with general information and later more specific materials
- discussion of challenges
- leadership training.
Annette’s research group is developing tools and approaches for patient engagement training.
Transcript
So we have different projects, different levels of commitment to patient engagement, as you would expect there are some projects that are incredible and others that are not as strong in patient engagement and sometimes it’s the will, but more important the knowledge about how to do patient engagement. So […]
Julie thinks that patients and researchers should be trained in the same room to level out power differences
Transcript
So supporting engagement and partnership in research starts at a level of first of all identifying who those patient and family and caregivers are that want to partner. And so I think we’ve got to be really public about the opportunity. I think we’ve got some – a really great […]
Cathy enjoyed the collaborative aspect of a joint training initiative she attended.
Transcript
Again, back to being a participant in the Canadian Task Force of Preventative Health Care, someone from there, [name] actually, sent me an email saying, “This course is coming up, are you interested?” So they gave me an outline of it. It was the first time the course had been […]
Level of training
There were different perspectives regarding how well or how much patients should be trained to engage in research as partners. Some participants felt that too much training would transform patients into researchers rather than focusing on patients’ unique contribution of their own knowledge and experiences. Some patients on the other hand expressed a need to learn more about the research methods or about how to read and interpret research data. Other participants felt that patients and researchers should receive the same information or that it was important that researchers and participants attend the same training to develop a shared understanding and expectations.
It was also indicated that it is important to consider the time requirements and availability of the training participants, and also to try to support diversity and provide training beforehand rather than during the research process.
Suzanne would like to learn more about how to read and interpret research data
Transcript
Well, I guess one thing would be, how to understand, how to read, interpret and … not a statistics course, but more training that would say, look where the focus is, look where the discrepancies are, look where there may be questions that aren’t answered or were never even asked, […]
It is important that researchers and patients are learning together, from Emma’s perspective.
Transcript
Interviewer: So you also mentioned training as sort of research training and resources, is there any kind of other training you can think of or specific resources ideally that you would want to see to help support researchers? I mean I think I mentioned the self-awareness thing, I think that’s […]
Other requirements for support were highlighted, for example several researchers indicated a need for guidelines that might cover the ‘nitty gritty’ details of patient engagement, guidance regarding compensation and describing the different levels of participation. Such guidelines could also be helpful when establishing a budget and when applying for grants etc. Similarly, researchers indicated that there is a need for funding to support engagement with patients and caregivers in the grant development phase. And finally, some researchers have highlighted the need for a ‘go-to’ resource on partnership while others pointed out the value of existing resources, such as courses provided by CIHR, the Strategy for Patient-Oriented Research (SPOR) units and the McMaster Forum Masterclass on patient engagement. To read about the types of training patients and researchers had before working together, you can visit Path to Involvement.
Review date: 2022-03