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
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.
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.).
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.
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.
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.