NCI Puts Social Media in the Spotlight
When SWOG started our social media working group back in 2012, we stood alone. No other group in the NCTN had such an assembly. Only two of us – SWOG and the Alliance – were on Twitter. And ASCO had just put out its first practical guidance to oncologists about the responsible use of that type of communication.
SWOG’s Drs. Don Dizon and Mike Fisch were two of the authors on that guidance. In fact, Mike was co-chair of the SWOG social media working group, with Dr. Mark Lewis, and gave a plenary talk on social media at the SWOG spring 2013 meeting. In 2015, the social media working group became the digital engagement committee – now a full research support committee with an expanded scope. The digital engagement committee not only supports and tests the use of social media in clinical trials. It supports and tests the use of all digital tools – including text messaging, web and smartphone apps, wearable devices, online videos, and more – to improve trials and to improve communication with members and the public.
Things have moved along in the social media realm. Don and Mike represented SWOG last week in front of more than 100 staff from NCI, patient advocacy groups, and experts from academia, government, and the private and non-profit sectors. SWOG investigator Dr. Mina Sedrak and SWOG communications manager Wendy Lawton also presented. The meeting, simultaneously videocast by NIH around the world, was the first NCI workshop on the topic of social media and clinical trials. The event brought home two truths. When it comes to cancer trials, social media is here to stay. And, while you know how much I hate to toot our horn, I have to point out it has been recognized that SWOG is at the forefront.
The NCI now specifically funds trials that use digital tools and manages a whopping 44 Twitter accounts. ASCO not only has a social media guidance document, but a formal policy, an online course, a working committee, and on display earlier this month at its 2018 annual meeting, a cadre of 18 “featured voices” – oncologists who share their views of the ASCO meeting via Twitter. Another sign of the times: The New England Journal of Medicine is now on Instagram.
Social media isn’t just about digitally getting and sharing news, networking with peers, or connecting with patients – all worthy goals. Social media is, now, how some pioneering trials are done. At the NCI workshop last week, biochemist Dr. Corrie Painter from the Broad Institute of Harvard and MIT detailed the progress of genomics studies – run 100 percent online – in metastatic breast cancer and angiosarcoma, with a prostate cancer study in the works. By finding, consenting, sampling, and tracking hundreds of patients through the Internet, the Broad believes it can rapidly accelerate the pace of oncologic research progress. Jamie Holloway, a PhD tumor biologist and clinical research advocate, described her work with Science 37, a private company that runs “site-less” clinical trials in oncology, dermatology, and other diseases using a cloud-based mobile platform and telemedicine.
I’m proud SWOG saw the early potential of digital tools in cancer clinical research, and created a powerhouse research support committee. The digital engagement committee has a mission statement and guiding principles, and 35 members that include some of our best investigators and patient advocates - plus two NCI staff members. The committee just approved a five-year strategic plan and put in place a system for reviewing digital study concepts from our disease committees. The team has published in an academic journal, launched a private Facebook group for SWOG members, and now has funding for a video project.
Now other NCTN groups are holding sessions on digital health and social media and, I suspect, new NCI initiatives will spin out of last week’s workshop. I can’t wait to see what’s ahead.
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