Some reports show that up to nine out of 10 adverse reactions from drugs go unreported. In an effort to find those possible adverse drug reactions in medications, pharmaceutical companies are reportedly searching social media for a better chance at learning of potential adverse drug reactions. There are many potential adverse drug reactions that patients might not think of to report to their health care provider, according to The Pharmaceutical Journal.
“Adverse drug reactions (ADRs) are grossly under reported by everyone, including healthcare professionals, but particularly so by patients,” David Lewis, head of global safety at the Switzerland-based pharmaceutical company Novartis. Novartis is working on a three-year project called Web-RADR (Recognizing Adverse Drug Reactions) that will in part use social media information to determine if there are aftermarket adverse drug reactions in various medications. The program even uses the hashtag #pharmacovigilance.
— WEBRADR (@WEBRADR) December 16, 2014
Everyday, people take to social media and talk about their medication or their children’s medication. These scientists believe these posts have the potential to quickly warn pharmaceutical companies of potential drug reactions.
i so dont miss the dreams i had when i was on zoloft
— hayleejean. (@thee_most_dope) March 13, 2015
— Захар Данич (@xecypfop) March 13, 2015
Apparently Levoquin makes me hyper-sensitive to the sun… Ouchy. http://t.co/85X6vg0BxR — Aaron Rogers (@aaronrogers1975) June 24, 2014
Hopefully taking this adderall will make me study and not just vape in my bathroom while intensely staring at my shower head for 8 hours
— real Mario Batali (@OpiateSaiyan) March 5, 2015
“Mining data from social media gives us a greater chance of capturing ADRs that a patient wouldn’t necessarily complain about to their doctor or nurse. Physicians are great at diagnosing illnesses and noting objective signs, but patients are great at reporting subjective reactions and feelings,” Lewis explained.”For example, a psychiatrist can’t see suicidal ideation as an ADR while a patient can describe it perfectly.”
Long before social media took on the form we see today, an American with HIV began taking antiretroviral medications, according to The Pharmaceutical Journal. On a patient web forum discussion board for the drug, back in 1997, the man wrote, “My belly button went from an inny to an outy.”
Before long, other patients reported the same adverse reaction to the antiretroviral drug on the discussion board. The adverse reaction was initially only reported through this old school form of social media. It became known as lipodystrophy syndrome. No one had even known it was a possible reaction that could come from the drug, because the drug’s safety trial only ran for 48 weeks, and this syndrome didn’t develop until after that 48 week cut-off point used by the drug company’s safety assessors. Therein lies the value of social media monitoring for adverse drug reactions, the pharmacovigilance supporters say.
Still, the idea of monitoring social media doesn’t sit well with some people, while others wonder whether a patient experiencing an adverse drug reaction who posts about it on social media should be contacted and informed of what they might be experiencing. “Would that be helpful or creepy,” the scientists wonder.
What do you think? How would you feel if someone contacted you and told you that, while searching social media for evidence of adverse drug reactions, they stumbled on your social media post?
[Photo adapted via Pixabay]