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Social Media And Patients: Pharma’s Use In Clinical Research

April 21, 2014

This is the third Blog Post in a series that examines the use of different social media channels by pharmaceutical companies and patients.

With the increase in pharmaceutical companies developing orphan drugs for rare diseases, there is a need for tools for biotechnology companies, rare disease patients, and healthcare professionals to provide the capability to find clinical trials appropriate for their disease, geographic location, and other important factors. In clinical trials for rare diseases, the sample size is usually small, requiring innovative approaches to optimize the study design and data analysis, and is also a challenge for recruiting patients. This is an important use of social media tools – the use by pharmaceutical companies to engage the rare disease community to help recruit and find patients for clinical research.

The Tufts Center for the Study of Drug Development (CSDD) is an independent academic non-profit research group at Tufts University in Boston, Massachusetts. The mission of the Tufts CSDD :

“ is to develop strategic information to help drug developers, regulators, and policy makers improve the quality and efficiency of pharmaceutical and biopharmaceutical development, review, and utilization.”

One of Tufts CSDD products is the bi-monthly Impact Reports, that summarize current original research from the organization in an easy compact format. This series of reports analyzes data and provides information on current drug regulatory and development issues.

The latest Impact Issue is the March/April 2014 issue titled, “Drug sponsors tread cautiously using social media to aid clinical research”. The Summary Report is available for FREE. What the CSDD Impact Report concludes is that drug developers are proceeding slowly and cautiously with the use of social media for engaging patient communities. Here are a few findings from the Summary Report about the use of social media tools by pharmaceutical companies for engaging patients :

•   Drug developers are concerned with violating patient privacy and confidentiality

•   Drug developers use social media mainly to distribute information and to “listen to patient and professional conversations” (social listening) to gain insight into the patient community

•   Only 20% of drug companies that use social media directly interacts with patients

•   Most drug companies contract out or outsource engagement with patients to a third party or uses more conservative approaches for patient engagement (i.e. banner ads on social media sites)

•   Social media is only being used to recruit patients in 11% of all clinical trials.

According to a January 2014 Report, “Engaging patients through social media – Is healthcare ready for empowered and digitally demanding patients ?”, from the IMS Institute for Healthcare Informatics, pharmaceutical companies should and need to make better use of social media tools to engage patients. According to this report, almost 50% of the top 50 pharmaceutical companies worldwide use social media tools like Twitter, Facebook, or YouTube. But only 20% of these companies use all three of these social networking tools. Other findings from the report:

•   Regulatory agencies, such as the FDA, are active in social media

•   Wikipedia is the single leading source of medical information for patients and healthcare professionals, with rare diseases showing a “higher frequency of visits than many more common diseases”.

Please Note: “Network Learner” courtesy of The Gold Guys Blog [CC-BY-SA-2.0], via Wikimedia Commons.

Copyright © 2012-2014, Orphan Druganaut Blog. All rights reserved.

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