Social media easing into a role in clinical research

However, a problem that needs addressing is fragmentation and uncoordinated use

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BOSTON—Facebook, Patient Community, YouTube, Twitter and mobile apps are all being used to one extent or another to help shape clinical research, according to a survey of 20 large (R&D budgets $1 billion or more) to medium pharmas (R&D budgets between $500 million and $1 billion) and contract research organizations conducted by the Tufts Center for the Study of Drug Development (CSDD).
The research and analysis at CSDD was led by Ken Getz, a Tufts University associate professor and director of Tufts CSDD, and Dr. Mary Jo Lamberti, senior research fellow. They concluded that social media are 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 amid a number of concerns.
As a result of these widespread concerns, nearly all companies report fragmented and uncoordinated use of social media with little policy or guidance to govern the practice. Top concerns cited include introducing research bias such as falsifying eligibility, un-blinding treatment assignment and distorting adverse event experiences associated with the study drug. Other concerns centered on social media encouraging non-adherence and early drop-out, providing medical advice regarding safety and efficacy, violating privacy and confidentiality and influencing patient willingness to participate.
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 Getz.
Other findings from the study, reported in the March-April Tufts CSDD Impact Report, noted that 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 patient engagement to a third party or use more passive approaches, including placing banner ads on social media sites.
One significant finding is that social media are being used to recruit patients in about 11 percent of all trials. While none of the 20 major pharmaceutical, 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. In a companion study, a Tufts CSDD survey of patients, 24 of 27 said sponsor companies should use social media to solicit patient feedback when designing case report forms and 22 of 27 said sponsors should solicit feedback on protocol procedures and scheduling.
Although currently utilized in a small minority of instances, patient recruitment for clinical trials through social media is expected to grow, the Tufts survey reports, with nine of 14 companies planning to increase adoption of social media to recruit in the U.S. and five of 12 planning to do so in Western Europe. Sponsors place a premium on the ability to track the impact of social media on recruitment and retention: 12 of 13 companies report tracking the number of leads generated; 10 of 13 report tracking the number of patients screened; 8 of 13 report tracking screen failure rates and subject randomization rates.
Social listening—also called social media monitoring—is also increasingly popular with seven of 13 sponsors reporting they regularly engage in the practice to learn about marketed drugs but not to support clinical research. Sponsors report that the lack of experienced vendors to conduct social listening to inform clinical research is the main barrier to adopting this practice.
The CSDD at Tufts University provides strategic information to help drug developers, regulators and policy makers improve the quality and efficiency of pharmaceutical development, review and utilization. Tufts CSDD, based in Boston, conducts a wide range of in-depth analyses on pharmaceutical issues and hosts symposia, workshops, and public forums, and publishes Tufts CSDD Impact Reports, a bi-monthly newsletter providing analysis and insight into critical drug development issues.

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