For many patients who have been newly diagnosed with a disease, social media is the first place they turn for answers, NPR reports.
A slew of forums and message boards have popped up on the internet to help patients learn from others' experiences with various illnesses. These social networks offer exclusive insights into patients' care journeys — such as which ice pack they prefer or recovery tips — that a physician may not be able to offer. These forums also have the potential to reveal important drug reactions clinical trials may have failed to recognize, and drugmakers and caregivers are taking notice.
"These weren't things that my doctor could tell me, and as much as I appreciate their expertise, it's also really limited by the fact that they've never really experienced any of this themselves," Allison Ruddick, a colorectal cancer patient who used online forums to inform her disease, told NPR.
One website, called Inspire, enables patients to discuss their treatment and drug side effects in an internet-based community setting. Another website, Synthesio, markets itself to drugmakers as a way to address customer questions, conduct market research and influence purchasing.
Researchers have combed through forums like these to better understand the side effects of various treatment therapies. However, these posts are much more vague than insurance claims and health records, which are typically mined for studies on side effects, yet also typically harder to access.
However, researchers warn patient generated information on forums may be subject to bias, as younger, white women are more inclined to contribute than black women.
Privacy also poses an issue. Patients' health records are protected by HIPAA, while online public data aren't. However, clear language in forums' privacy statements — such as in Inspire's — makes it clear the data patients post online can be used in research if the posts aren't made private.
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