When Allison Ruddick was diagnosed with stage 3 colorectal cancer in October 2014, she turned to the world of hashtags.
After her initial diagnosis it wasn't clear if the cancer had metastasized, so she was in for a nerve-wracking wait, she says. She wanted outside advice. "But they don't really give you a handbook, so you search kind of anywhere for answers," Ruddick says. "Social media was one of the first places I went."
Under the hashtags #colorectalcancer and #nevertooyoung on Facebook, Twitter and Instagram, other patients were sharing a fuller picture of their experience with cancer treatments.
Later she found even more advice on specialized message boards. Patients posted everything from the details of their surgeries to the ice packs they liked best as they recovered. "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," Ruddick says.
Partly because of that experience gap, doctors and drug companies are keen to learn from online communities, too. They're analyzing social networks to get a faster, wider look into how patients react to drugs, sometimes picking up information about side effects that clinical trials missed.
The rule of three
Stanford University dermatologist Bernice Kwong specializes in skin conditions that tag along with cancer treatments. In her practice and on patient message boards, she's constantly on the lookout for symptoms that could be drug reactions.
In January 2017, a patient came to Kwong's office with an unusual complaint. "I've noticed that when I work out, I just get really hot," he told Kwong. "I don't sweat anymore, and I used to sweat so much." He was taking a drug called Tarceva, or erlotinib, that's used against lung cancer.
At first, Kwong thought the problem might be hormonal. But soon after, two more of her patients at Stanford on the same drug reported that they'd also stopped sweating. "Anytime something hits three, I think, OK, I gotta look into this a little bit more," she says.
But she hadn't seen any reports before of a lack of sweating — hypohidrosis — as a side effect for Tarceva. Her sample size of three patients was small. She'd need more data to figure things out.
From talking with patients and perusing online forums, Kwong knew people discussed their treatments and side effects online. In fact, hundreds of thousands of people participate in support groups and communities she'd looked at on the website Inspire. She partnered with the site with the idea that its trove of patient reports could connect more dots between hypohidrosis and Tarceva.