SWOG Plainly Leads the Way
In July, patient advocates and communication managers from across the NCTN will meet with a handful of national experts in Chicago to co-create a plain language template aimed at summarizing our National Cancer Institute open trials.
The one-day workshop idea, started at SWOG, will result in a guide every group in the NCTN can use to write trial summaries that are understandable to the general public – the very first time they read them. While there are many definitions for the term plain language, federal guidelines say that it incorporates features like short sentences, active voice, graphics, and common, everyday words, all intended to help audiences find what they seek, understand what they find, and use what they learn to meet their needs. In our case we want communications that help the public find our trials, understand the key facts about each study, and help them decide whether the trial might be right for them. Of course, we encourage anything that also helps them have productive conversations with their oncologist.
Here’s the main reason why plain language is important: It will help us directly connect with the public. Patient enrollment powers our trials. And with the rise of the Internet, and, in particular, social media, we have more direct access to potential volunteers than ever before. To help patients and caregivers understand our work, and whether a clinical trial is a good cancer care option, we need to communicate using terms and graphic elements that are easy to understand.
SWOG is leading the way because this year we will hire a plain language writer to work in the group chair’s office. This new hire, who will work with Wendy Lawton, our communications manager, was included in our six-year grant proposal to the NCI last year and will be the first position of its kind in our network. Since plain language is new ground for the group to plow, the writer will need a template to create summaries of all our open trials. These will be listed prominently on SWOG.org. Eventually, they will also need a template to create summaries of our trial results. The writer will also help draft social media posts, patient brochures, and other patient-facing materials.
The concept for the template collaboration came from Morgan Cox, Hope grants and communications manager; Rick Bangs, SWOG patient advocate chair; and Wendy. Last summer, they wrote a grant request to Hope and this fall received $50,000 in funding to organize and host the workshop. The trio pulled together a planning team that includes advocates and communications managers from the Alliance, ECOG-ACRIN, NRG Oncology, and the Canadian Cancer Trials Group.
Background work includes conducting focus group interviews, gathering best practice information, and making preliminary recommendations about a glossary and other key elements of a template. The goal of the workshop is producing a guide everyone in the NCTN can use.
I’m excited about this effort, and enthusiastically supported both the plain language hire and the Hope funding for the workshop. This is a smart investment in our trial infrastructure, and a great patient outreach tool. I’ll keep you posted on progress as we move ahead on this important initiative.