At the Crossroads of Social Media and Clinical Trials: A Workshop on the Future of Clinician, Patient and Community Engagement

Jeff Abrams, MD, Associate Director, Cancer Therapy Evaluation Program,
DCTD, opens the workshop.

Clinical trials are indispensable for driving cancer treatment discoveries; however, clinical trial accrual and retention remain significant challenges, particularly in minority and underserved communities. Social media is having a paradigm-shifting effect on clinical trials by facilitating cross-cutting, multi-directional communication among patient, advocate, researcher, and clinician communities. NCI has played an active role in developing social media strategies for clinical trials. To further explore strategies by which social media may engage diverse stakeholders in cancer clinical trial communities, NCI convened a workshop on June 7-8, 2018 (agenda) entitled, “At the Crossroads of Social Media and Clinical Trials: A Workshop on the Future of Clinician, Patient and Community Engagement.” Both days of the workshop are available to view via NIH Videocast (Day 1 and Day 2).

During the highly interactive meeting, attendees discussed approaches to engage and educate the public and health care providers about cancer clinical trials using evidence-based social media strategies. The Attendees and 38 workshop speakers included patient advocates, clinicians, representatives from NCI’s National Clinical Trials Network (NCTN), ethicists, and digital communications experts. Speakers provided their perspective on the relationship between clinical trials and social media, as well as guiding principles for the attendees to consider during the breakout sessions.

Presentation Sessions

• Clinical Trials Go Social — Connecting Trials to the Community

  Existing social media efforts in clinical trials, potential impact of information flow, and challenges for patient and physician engagement

• Engaging Patient Communities Online

  Successful social media efforts to engage patients in clinical trials and medical discovery, including diverse and underserved populations

• Clinician Focus — Community Building and Outreach

  Engagement of patients, other physicians, and the community by clinicians and clinical researchers through social media

• Innovation through Collaboration and Partnership

  Successful partnerships to help engage the patient and clinician communities around clinical trials

• Social Media Tools and Metrics

  Strategies to measure and improve targeted outreach

• Future Considerations

  Strategies for moving forward, barriers and facilitators to social media use for patient and community education about clinical trials; Promoting equitable access to innovative therapies

Breakout Topics

Holly Massett, PhD, Cancer Therapy Evaluation Program,
facilitates a breakout session.

• Facilitating social media access to clinical trials among populations who experience disparities
• Harnessing social media tools to increase awareness about tissue/biospecimen donation during clinical trial participation
• Social media strategies to educate and improve the Adolescent and Young Adult (AYA) participation in research
• Leveraging social media to improve patient understanding about clinical trials and to harness patient involvement in research design and development
• Mitigating the spread of misinformation and unblinding in clinical trials via social media

Executive and full summaries of the two-day proceedings are available for download:

• At the Crossroads of Social Media and Clinical Trials Executive Summary
• At the Crossroads of Social Media and Clinical Trials Workshop Summary

Follow the conversation on Twitter using the hashtag: #ClinicalTrialsSM

NCI and the Cancer Moonshot Network for Direct Patient Engagement sponsored the workshop, and staff from NCI’s Division of Cancer Treatment and Diagnosis, Division of Cancer Control and Population Sciences, and Office of Communications and Public Liaison planned the event.