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. 

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What should be taught
Level of training

Supports needed

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 most helpful thing that we could tell you in a course? Find out what it is and really put that message out there - I think it's really important.

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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. 

Supports needed

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 it was, because, everything's an acronym, right. Well, people don't know what those acronyms mean.

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Supports needed

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 be and sort of the different elements of the - how the study will be rolled out.

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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.). 

Supports needed

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.

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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.  

Supports needed

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.

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Supports needed

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 baseline to start with with the introduction of SPOR, the Strategy for Patient-Oriented Research from CIHR.

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Supports needed

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 offered and I like doing things that are first time through, so we kind of all learned together. 

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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. 

Supports needed

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, look for the omissions.

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Supports needed

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?

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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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Last updated
2020-03
Review date
2022-03

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