I attended this webinar yesterday to learn about patient engagement in research development because of a simple reason: here at Wellpepper patient engagement is very important to us and I love research. I think of research as a tree, a question starts in the trunk and branches out to all these different observations while the leaves take in nutrients so the tree can thrive. Patients are a lot like leaves; they provide nutrients for the research to grow and in some cases without them there would simply be no tree. As with the example of the Comparative Effectiveness Research Translation Network, CERTAIN, they have found ways for patients to provide that vital ‘nutrient’ directly via a Patient Advisory Network. The Patient Advisory Network is made up of caregivers and patients that partner with researchers to provide their perspective in order to improve current research. This is a wonderful collaborative way for a patient to have a voice for many and as Dr. Lavalle said “…patients bring in an insider’s perspective that clinicians and researchers may not think about.”
The role that patients have through the Patient Advisory Network is indispensable; they provide an insiders perspective, articulate the most pressing questions and concerns, and help researchers think through what information should be relayed and how. For example, using language that is understandable by patients themselves, not just clinicians! Patients can partner with CERTAIN through advisory group membership, as a research partner, as a research and materials reviewer, or as a patient representative. One way CERTAIN reaches patients is via their blog; take a look and see if you can help!
In this webinar, Dr. Lavalle talks about the development over the last year of the CERTAIN project, Comparison of Outcomes of Drugs and Appendectomy (CODA) Trial for Appendicitis. The study poses the question: is there a new way we should be approaching the treatment of acute appendicitis – Appendectomy or ‘Antibiotics First’ strategy? “No studies to date have compared the impact of these two treatments for appendicitis on the overall patient experience or included standard PROs in addition to clinical outcomes.” With this factor ascertained, the importance of incorporating the patients voice in the very beginning was important to CODA. Therefore, CODA posed the following question to the CERTAIN Patient Advisory Network: If you landed in the ER with Appendicitis would you would you randomize between appendectomy or antibiotics? The attached graphic sums up the results of such findings. Dr. Lavalle was surprised that so many people would randomize, me too actually!
Patient engagement provides a dynamic aspect to research, that comes to all of us as no surprise, but CERTAIN has done a wonderful job of creating a great community that brings together both patients and research experts that in return makes research outcomes that much more beneficial. I am very curious what the patient centered outcomes will be for the treatment of appendicitis with either surgery or antibiotics. I guess we will all find out when the CODA project concludes in 2020.
Thank you for the wonderful talk Dr. Lavalle!
Next Surgical Outcomes Club Didactic Session: Thursday April 21, 2016 at 2 pm (ET)