If you’ve read our previous two articles you know why Salem Oaks focuses on patient education, you know a bit about what problem based learning is and why it’s our preferred method, but can you see how you or your organization can use what we offer?
The Friedreich’s Ataxia Research Alliance (FARA) is “dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich’s ataxia.” They’re also one of the best examples of what a patient organization can be. Salem Oaks started working with FARA in the fall of 2018 to pilot our first virtual team course, Join-the-Team. We at Salem Oaks were confident in our teaching methods and course design, but I don’t think any of us were prepared for just how powerful the experience would be not just for the participants, but for us as well. Since then we’ve attended a FARA Ambassador meeting and their Annual Conference, Kevin participated in RideATAXIA, and we’re even working with someone we met through FARA to create our podcasts.
We knew we wanted to work together again, but as is often the case with foundations, funding presented a challenge. At Salem Oaks we often speak about solving the puzzle of how to bring our courses to patients with minimal cost to the patient or patients groups themselves. In late 2019 FARA won a grant from the H.G. Barsumian, M.D. Memorial Fund. This fund provides funding to groups focused on medical research. Through this grant FARA was able to hire us to design a course to help their ambassadors prepare to become active participants in research.
The course we’ve designed with FARA teaches participants about clinical trial protocols and institutional review boards (IRBs). During the course the participants will work together as a team to learn how an IRB is formed, what responsibilities it has, and how it works with a research team. By the end of the course they will review a clinical trial protocol using what they have learned. By using the problem based learning technique participants will not just learn the facts, they will gain experience they can use.
Salem Oaks doesn’t just teach through experience, we learn and improve that way too. In the first half of 2020 we will be teaching the four session course to several groups of 6-8 participants. With the help of FARA we’ll be conducting post course evaluations in order to improve with each iteration. Our first group of participants are halfway through the course, and things are going great. It’s always exciting to see how students bring their life experience to problem based learning, and how engaged they become in the problem. Ethics are an important part of clinical trial protocol reviews; this group is especially engaged in talking about ethics and how the trial participants are represented on an IRB. That’s the sort of engagement we can’t necessarily predict, and keeps every course we teach new and engaging for us as teachers.
We’d like to learn from you too, as we share our experience and teaching style with you and your patient group. If you think this type of course would help your organization build capacity, and you’d like to talk more about how we can make it work contact us.