For Patients, Social Media Provides Perks and Perils

CUREHematology Special Issue 2018
Volume 1
Issue 1

A retired oncologist and survivor talks cancer in a digital world.

LAST YEAR, A DEAR friend received a cancer diagnosis and gave me a call. “Do you think I should put it on Facebook?” she asked. Her sister had suggested that by sharing updates about her planned surgery, she could efficiently keep people — friends, neighbors, cousins and selected colleagues — in the loop about her condition.

“Think before posting,” I advised. Social media does have its advantages for patients. “But once you post about your medical condition, you can’t take it back.” Besides, there’s a lot of misinformation out there. People will offer all kinds of advice.

Since I became a journalist in 2009, online resources for health have proliferated. Dozens of websites sponsored by government agencies, like the National Institutes of Health and Centers for Disease Control and Prevention, or run by disease-oriented nonprofit organizations, offer vetted facts and definitions, research updates, statistics and news of clinical trials.

Through disease-specific Facebook pages and Twitter hashtags, it’s easier than ever to connect with peer patients and caregivers. In Facebook groups, members trade tips for coping with hematological conditions including sickle cell disease, multiple myeloma and low platelets.

Social media facilitates ties between patients that tend to grow over time and may even be life-saving.

For people living alone or in rural areas, web ties represent more than a source of health information; these connections foster camaraderie and, surprisingly often, true friendships emerge. In recent years, I’ve seen patients and advocates gather at medical conferences; as online acquaintances meet in real life and spend occasional days together, the sense of caring and trust — between patients and within their virtual communities — becomes genuine and stronger.

Some patients choose to follow expert physicians on Twitter; a trusted doctor or hospital may indeed be one of the more reliable sources of online information about health. Yet sometimes it’s patients who take the lead in distributing careful updates. Social media posts, such as about a new blood thinner or lymphoma drug, may prompt patients to ask better questions of their providers and, in that way, lead to better care.

Web connections do carry risks, however. On the internet, anecdotes abound. Individuals’ stories may disproportionately affect others’ treatment choices. When a patient reports doing well on a new drug or in a clinical trial or enters remission, their improvement can spark a feel-good moment in their network. Conversely, news of someone entering hospice or dying can reverberate with unexpected depth, stirring sadness.

Fake news about health spreads on social media, just as it does for other topics. Doctors disagree; what one clinician calls a terrific new drug might be deemed dangerous by a colleague. Yet by following conversations among physicians, ordinary people may gain a better sense of legitimate medical debates that previously took place behind closed doors. Now, those discussions about data and evidence are exposed for all to read. This kind of information can be both confusing and illuminating.

Consider the loss of privacy. A man with chronic leukemia, for instance, might post enthusiastically about finding a doctor he likes and responding to medication. A few years later, perhaps when looking for a new job or partner, he may regret his prior openness.

Telling “the world” of your illness can yield sympathy and connections, but it cannot be undone. Joanna Fawzy Morales is a Los Angeles attorney who co-founded the nonprofit patient advocacy organization Triage Cancer with her sister, Monica Fawzy Bryant. The siblings aim to raise awareness of patients’ legal rights, including privacy and workplace concerns. Last June, I heard Morales speak before hundreds of cancer survivors at a Cancer and Careers meeting in New York City.

“What you post online can affect others besides you,” Morales said. She shared the cautionary tale of a woman who posted on Facebook that her daughter had breast cancer. The daughter, in her 30s, wasn’t keen on publicizing her diagnosis. Other, less obvious sources of lost privacy include having your name listed in disease-related charity events or being tagged in fundraising photos.

In the end, my friend elected not to share her diagnosis on social media. “I’m glad I held back,” she told me later. “I value my privacy too much. If I want to tell people, I can let them know by phone or email.” It’s each patient’s decision. As with almost any medical intervention, there are benefits and risks to consider.

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