A growing number of people turn to the Internet for information on healthcare. More and more of them also use social media — like Twitter and Facebook — to share their personal experiences, whether it’s rating their healthcare provider or discussing their medicines.
Understanding the benefits and risks of medicine from a patient’s point of view is important to the evaluation of our medicines. We set out to find new ways to tap into the information patients share about their ‘real-world’ experience with our medicines.
With the help of digital experts from outside GSK, we began to analyse publicly available internet posts, filtering out unrelated information and anything that would identify individuals to GSK.
In a 2-year period, we found approximately 22 million Twitter and Facebook posts discussing potential adverse events for 1,000 medicines. Compare this figure to the 8.6 million adverse event reports received by the U.S. Food and Drug Administration’s Adverse Event Reporting System (FAERS) since 1968, and the size of the challenge becomes clear.
We need to hear from patients about their experiences with our medicines, Social media presents an opportunity to listen in a much more immediate and direct way than we’ve used in the past.
An additional evaluation of 15 medicines showed that 26% of posts also mentioned the benefits of taking the medicine and useful information around how long a medicine took to work, how long the effects last, and how it compared to other treatment options.
Monitoring social media when one of our inhaled allergy medicines became available over the counter was also hugely helpful. The feedback enabled us to understand how well the product worked for patients when their healthcare professionals were no longer involved in choosing the medicine or giving instructions on dosing.
Paul Irving has been a friendly voice to patients for 16 years at our US Patient Response Center. He tells about his passion for helping patients and reveals what it’s like to be at the other end of the line.
Social media posts have also helped us to evaluate and characterise abuse of a medicine, for example reports of crushing tablets that were meant to be swallowed and then consuming them in other ways such as by injection or inhalation. Being aware of common misuse of treatments helps us to make decisions on appropriate labeling and further guidance.
While we’ve come a long way in our use of social media, there is still a lot of work to do to fully understand the strengths and weaknesses of this data and to establish best practices. For example, we are working to create automated tools that can sort through very large volumes of information and identify urgent issues so they are addressed quickly.
We believe people will continue to use social media to share their experiences with medications. By paying attention to comments - whether they are about the benefits or about potential drawbacks – social media can help us to understand the full context of patient experiences. We’re excited by the potential of social media to improve our patient care and we can’t wait to see where it may take us next.
