It’s Plainly a Win for Patients!
On Monday, we gathered with our NCTN and NCORP peers and together scored a big success for patients with cancer, as well as their caregivers.
We agreed on how to more effectively introduce the public to our cancer clinical trials – by creating short summaries that use words everyone can understand. This plain language template can be utilized by any NCTN group to spark interest in an open trial, and/or to spur a conversation with a health care provider.
SWOG Cancer Research Network plans to go even further. By the end of the year, we will have hired a plain language writer, and they’ll use the template to create snapshots of all SWOG trials open for enrollment. We can use our fast-growing Twitter account to direct people to these summaries, which will be published on SWOG.org. They’ll be printer friendly, so patients can bring the information to their doctor for discussion. Anyone can call the NCI Contact Center at 1-800-4-CANCER to learn more.
But the real value of Monday’s plain language workshop in Chicago is in the broad group it benefits. The event idea spun out of SWOG and was generously funded by The Hope Foundation for Cancer Research. But it was a true team effort, with members from every group – the Alliance, COG, CCTG, ECOG-ACRIN, NRG, and SWOG – gathering to decide on template content, terminology, and design.
Everyone had a voice. Everyone had a vote. And anyone can use the final product. That means that all our trials open in NCTN and NCORP – roughly 120-140 at any time – can be explained in simple summaries written in simple terms. That’s good news for us. If more people understand our research studies, more people might enroll. Patients and caregivers wonder how long a clinical trial might last, or how much it might cost. Plain language will help the public make sense of all of this.
Please note: These trial summaries will not be full protocols. They will not serve as informed consent documents. They will not outline in extensive detail treatment schedules and eligibility criteria, or risks and benefits. They’ll just be snapshots that include only the most pertinent details about trial conduct. The goal is giving patients enough information to want to continue the conversation with a doctor to see if the trial might be a good choice.
Deciding on “pertinent details” was not easy. The conference planning team hired a consultant, the nonprofit Center for Information and Study on Clinical Research Participation, to conduct pre-workshop research, including a literature review and patient interviews. What started as a 52-item draft template got whittled down on Monday to just 31 final elements, with the group also deciding on key terminology and design principles. For an eight-hour meeting, that’s pretty reasonable work. I hope the ultimate result will be informed and involved patients.