For several years now, SWOG has created a patient-friendly, plain language overview of each of our new clinical trials at activation.

We’re expanding that effort to incorporate the other end of the trial life cycle as well. We’ll now also produce a plain language summary of the primary results of each SWOG phase 2 or phase 3 clinical trial when they’re published in a journal. 

These “lay summaries” are intended for the volunteers who have joined our studies, and they’re expertly pitched to the average patient’s reading and health literacy levels.

In the applications for both our NCTN operations grant and NCORP Research Base grant (the latter still in development), SWOG has pledged to create and distribute such patient-directed summaries, and we’re making good on that pledge.

The group’s plain language communications expert, Andrea Mongler, has worked with study teams, patient advocates, a graphic designer, and others to refine a model for these summaries that incorporates the essential components of a results publication while being visually appealing and highly readable. 

Page 1 of each summary presents a brief overview of the results – the question asked, what we learned, and why it matters – simple, compact, and clear. 

Subsequent pages roll out a more detailed view – the study’s goals, who took part, what was involved, results measured, and how the findings can help patients and researchers.

After review by the NCI’s Central Institutional Review Board, we’ll post these summaries to the SWOG website’s Patients section, making them sortable by disease area and study number. 

We’ll also have them posted to the CTSU website, along with a brief message to patients that clinical site staff can use in contacting those who enrolled to the trial to let them know a results summary is available.

Finally, we’ll share the summaries on social media and, working with our patient advocates, send them to relevant advocacy organizations.

Summaries have already been created for a number of our recently published trials. These are in various stages of review, some now ready for CIRB submission. Look for samples at SWOG’s fall group meeting (registration opens August 4th!). 

We have an obligation to those who join our trials to let them know about the outcomes of those trials. Kudos to Andrea for putting this process into gear!

If you have questions, comments, or suggestions about that process, please reach out to the team at communications@swog.org.

Our question for your consideration as a SWOG member: what’s the best way to share these with past trial participants – and perhaps their families or caregivers – at your site?

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