Research Confirms: Valuable Patient-Centered Data on Inspire (Part 2)

In part 1, Can Patient-Generated Health Communication on the Internet Enhance Pharmacovigilance?, I shared the results of a think tank co-sponsored by the Drug Information Association (DIA) and the Cardiac Safety Research Consortium discussing the use of patient postings on social media for pharmacovigilance.  Today’s post answers the question: Would Inspire’s patient-generated health discussions be useful for pharmacovigilance?

Historically, pharmaceutical companies embraced a medication-focused approach to pharmacovigilance. Now, however, as R&D in the pharmaceutical industry is incorporating patient-centric methodologies in their processes, regulatory guidance is also transforming drug safety departments with expectations of new processes that include the patient’s perspective in drug safety.

As drug safety departments develop a framework in which to integrate the patient’s viewpoint more robustly into their process, they have looked toward social media forums, including patient / disease forums such as, as a possible resource for information on adverse drug reactions (ADR), medication error assessments and risk communications.

At the International Society for Pharmacoeconomics and Outcomes (ISPOR) 2017 conference in May, I presented a research poster in collaboration with Michele Thomas, with research performed in collaboration with Gregory Powell of GlaxoSmithKline (GSK) and Arooj Akhtar of ZeroChaos which revealed the value of communications between patients in online support communities.

For two disease areas, rheumatoid arthritis and systemic sclerosis, the GSK pharmacovigilance team first wanted to know if patient insights about these diseases exist in online disease-focused forums and second, what value would the threaded discussion data offer for drug development and patient safety-related activities.

To accomplish this, GSK with data scientists at ZeroChaos obtained 11 months (January 1 to November 30, 2015) of de-identified, publicly available, English language social media posts from the Inspire/Arthritis Foundation’s Support Group and Discussion Community.  That data pull consisted of over 5600 threads, comprised of over 62,000 unique posts by over 6500 authors.

To follow the progression of disease and disease diagnosis, the threads were linked and a random sample of those linked threads (2,817) was used as the final data set, representing over 3,601 authors. Expert reviewers conducted an analysis of these posts.

The analysis found that the length of time patients had the disease was discussed in 722 of 21,313 posts (3.4%), and of those posts 296 (41%) indicated that the patient had the disease for more than 10 years.  In 169 posts (23%) the patient was recently diagnosed, less than a year before.

Of the 21,313 posts, 13% (2762) contained information on medication and 3% (644) discussed adverse events (AE).  Treatment history, burden of disease and even lab and imaging results were discussed in this forum.

The team concluded that disease-focused data provides valuable patient insights based on long-standing experience with the disease.

Moreover, the team determined that data from the posts written by patients on had value to the pharmaceutical industry, especially because the discussion threads could be linked and create longitudinal posting records, a complete story of the patient journey.

GSK believes it is worth conducting further research to better understand how to leverage the patient insights that are available in Inspire’s vast data set of over one billion written words.  These words are communicated by over 1.3 million registered members, interacting in more than 200 online groups.

Patients and caregivers across several thousand reported conditions are writing about their experiences on, and generating relevant information that others who are facing similar experience can find.  That information could be useful for pharmacovigilance.

To download the ISPOR 2017 poster, click here.

See our infographic “Inspire’s Immunotherapy Awareness and Perceptions Survey”

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