Patient Voices Network Blog

Tools & Resources to Support Patient-Researcher Partnerships: Research Ethics Training

One of the goals of the CERTAIN Patient Advisory Network's Initiative to Support Patient Involvement in Research (INSPIRE) is to develop and disseminate tools and resources to support patient-researcher partnerships. In the initial stages of this work, we conducted interviews with 37 patients and researchers involved in patient-centered outcomes research to identify needs of the community to further support research collaborations. One of the things we heard from multiple people was that existing research ethics training is often lengthy, geared toward and academic audience, and at a level of detail that may not be relevant or meaningful to patient partners. Basic training in how research is governed from an ethical standpoint is often important for patient partners to have a shared understanding of the ethical framework and governance structure that research studies operated under. However, traditional trainings, such as those offered by the Collaborative Institutional Training Initiative (CITI), aren't always quite right for patient partners who may not have any other research background.

We learned about Project Tres through interviews conducted as part of INSPIRE. Initially developed to be a comprehensive and culturally relevant ethics training program for members of the research team conducting research within the Latino community, Project Tres offers research ethics training anchored in real-world examples and scenarios that were perceived by those we interviewed as being more layperson-friendly than other existing trainings that are primarily aimed at the biomedical community.

At CERTAIN, we have recently started a new research project in appendicitis and offered Project Tres as an option for our patient partners. One of our partners who took the Project Tres training had this to say:

"I was expecting it to be dry so I was pleasantly surprised. There were a lot of real life type scenarios that made it more interesting that I had anticipated. I also liked that they gave open-ended questions as opposed to multiple choice. It gave me a real opportunity to think through the material instead of just guessing. By the 3rd module I felt the questions were getting a bit repetitive, but overall I thought it was a useful tool."

Have you used Project Tres in one of your projects? Have you used or taken some other research ethics training that you found to be helpful? Share them with us!

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