Investigators in a major cancer clinical trials group largely believe that social media could be a boon to patient recruitment but, at the same time, don’t quite trust the process, according to the results of a survey published online December 28 in JAMA Network Open.
The survey was conducted among principal or co-principal investigators in the Southwest Oncology Group (SWOG) Cancer Research Network, and had 92 respondents.
A majority agreed that social media can help increase patients’ trial awareness (86%), education (82%), and access (75%).
But a smaller majority were also concerned about the risk of misinformation (60%) and misinterpretation of a trial (58%).
Additionally, many of the respondents (59%) believed that a trained moderator is needed to monitor such patient recruitment.
However, only 20 of the 92 trialists who responded have themselves used social media such as Twitter, LinkedIn, Doximity, and YouTube to recruit patients.
Medscape Medical News asked the study’s lead author Mina Sedrak, MD, of the City of Hope Comprehensive Cancer Center, Duarte, California, lead author of the survey, if it’s worth using social media platforms to recruit patients into clinical trials.
“Not at this time,” he answered, adding that there are no data showing that social media improves enrollment. “I think many clinicians and investigators are concerned about the spread of false, inaccurate, or incomplete health-related information on social media platforms, which may compromise the integrity of a research study.”
SWOG has been managing to recruit patients into trials without the use of social media: The group just reported results from a practice-changing trial in breast cancer that involved more than 5000 patients.
However, Sedrak acknowledged a major success in this arena — the Metastatic Breast Cancer (MBC) Project.
Over a 7-month period in 2015-2016, this group enrolled more than 2000 patients from 50 states as part of a translational registry study, which collects biological samples and medical records. Buoyed by social media outreach, this was an “incredibly rapid enrollment,” commented an expert not involved in the study.
There are other ongoing tumor registry projects, including the Metastatic Prostate Cancer Project and the Angiosarcoma Project, both of which are run by the Dana-Farber Cancer Institute and Broad Institute in Boston and also use social media to recruit patients.
“Best practices for trial enrollment are still a work in progress,” acknowledged Corrie Painter, PhD, of the Broad Institute in an email to Medscape Medical News. Despite long-term use, “[social media] is still an emerging technology and platform.”
Sedrak said that successes in registry studies such as the MBC Project trial may not apply to cancer therapeutic clinical trials, which have efficacy, adverse events, randomization, and other issues at play.
Cancer treatment trials are also well known to have problems with attracting patient participants, as highlighted in a 2019 paper.
Sedrak said that most patients are barred by structural and clinical barriers. “Some 56% of all patients with cancer do not have a trial locally available for them and, among remaining patients, 21% were not eligible for a trial,” he claimed.
Still, Sedrak and the survey authors hint that there is lost opportunity here.
“With more than 2.9 billion individuals worldwide using social media platforms regularly, their use has created an ability to disseminate health information with unprecedented speed, reach, and penetration,” they write.
Users vs Nonusers of Social Recruitment
The survey was sent out to 220 SWOG Cancer Research Network investigators and received 92 responses (45%); the respondents were largely nonusers of social media for patient recruitment.
Compared with nonusers, users of social media were more likely to be younger (age 45 or younger, 40% vs 21%), and to have ≥30% professional time dedicated to research (80% vs 57%).
Compared with users, nonusers were more concerned about misinformation (68% vs 30%), misinterpretation (67% vs 25%), undisclosed conflicts of interest (44% vs 15%), and violations of patient privacy (38% vs 5%).
Among users, Twitter (80%) was the most commonly used social media platform followed by LinkedIn (60%). Users were evenly split among men and women.
Sedrak acknowledges that some patients are fully capable of using social media to learn about trials and engage with them. But he would like to see more research on its use for recruiting clinical trial participants.
“Many patients today have a sophisticated understanding of their disease and the overall treatment landscape, and their presence on social media sites has enabled facilitated discussions around cancer clinical trials. Research is needed to understand how to communicate effectively with these expanding and robust online patient (and caregiver) communities to create and sustain trusted partnerships with patients throughout a study,” he concluded.
The survey and study were supported by the Hope Foundation for Cancer Research, Dr Charles A. Coltman Jr Career Development Award, National Cancer Institute, the Phase One Foundation, and the Center for Cancer and Aging. The authors and other experts have disclosed no relevant financial relationships.
JAMA Netw Open. Published online December 28, 2020. Full text
Nick Mulcahy is an award-winning senior journalist for Medscape. He previously freelanced for HealthDay, MedPageToday and has had bylines on WashingtonPost.com, MSNBC, and Yahoo. Email: nmulcahy@medscape.net and on Twitter: @MulcahyNick