Social media is gaining ground as an important tool to improve the clinical research process through more effective engagement of patient communities, but drug sponsors are proceeding cautiously, according to an analysis recently completed by the Tufts Center for the Study of Drug Development.

Nearly all drug sponsors have developed corporate policies to steer employee use of social media, but the lack of comprehensive, coordinated processes across most organizations has meant that the companies which are using social media in drug development are doing so in a siloed and experimental fashion, Tufts CSDD found.

"Inhibiting faster adoption of social media in drug development has been a lack of regulatory guidance, particularly from the U.S. Food and Drug Administration, and concerns about the impact of social media on research integrity," said Ken Getz, associate professor and director of sponsored research at Tufts CSDD.

Key concerns voiced by drug sponsors about using social media in clinical trials focus on violating patient privacy and confidentiality, jeopardizing research integrity, and influencing study volunteer receptivity to participating in clinical trials.

Other findings from the new study, reported in the March/April Tufts CSDD Impact Report, released today, include the following:

  • Drug sponsors are primarily using social media to distribute information (e.g., about drugs, diseases, and the company) and to listen to patient and professional conversations.
  • Only one in five companies that use social media directly interacts with patients; most contract out engagement to a third party or use more passive approaches, including placing banner ads on social media sites.
  • Social media is being used to recruit patients in about 11% of all trials.
  • While none of the 20 major pharmaceutical and biotech companies and contract research organizations participating in the study reported using social media for protocol design, nearly all said that input from social media communities would greatly improve the feedback they receive on program planning and protocol design feasibility.