After a Diagnosis, Patients Are Finding Solace—and Empowerment—in a Sensitive Corner of Social Media
Katherine Leon and her dog enjoy nice weather in their backyard in Virginia. Leon went from feeling like she was "wandering in the woods" with doctors who hadn't experienced her spontaneous coronary artery dissection, or SCAD, to starting the world's largest registry for research on the condition.
When Kimberly Richardson of Chicago underwent chemotherapy in 2013 for ovarian cancer, her hip began to hurt. Her doctor assigned six months of physical therapy, but the pain persisted.
She took the mystery to Facebook, where she got 200 comments from cancer survivors all pointing to the same solution: Claritin. Two days after starting the antihistamine, her hip felt fine. Claritin, it turns out, reduces bone marrow swelling, a side effect of a stimulant given after chemo.
Richardson isn't alone in using social media for health. Thirty-six percent of adults with chronic diseases have benefited from health advice on the internet, or know others who have. The trend has likely accelerated during COVID-19. "With increases in anxiety and loneliness, patients find comfort in peer support," said Chris Renfro-Wallace, the chief operating officer of PatientsLikeMe, a popular online community.
Sites like PatientsLikeMe and several others are giving rise to a patient-centered view of healthcare, challenging the idea that MD stands for medical deity. They're engaging people in new ways, such as virtual clinical trials. But with misinformation spreading online about health issues, including COVID-19, there's also reason for caution.
Engaged by Design
Following her diagnosis at age 50, Richardson searched the Web. "All I saw were infographics saying in five years I'd be dead."
Eventually, she found her Facebook groups and a site called Inspire, where she met others with her rare granulosa cell tumor. "You get 15 minutes with your doctor, but on social media you can keep posting until you satisfy your question."
Virtual communities may be especially helpful for people with rarely diagnosed diseases, who wouldn't otherwise meet. When Katherine Leon of Virginia suffered chest pain after the birth of her second son, doctors said it was spontaneous coronary artery dissection, or SCAD, involving a torn artery. But she had no risk factors for heart disease. Feeling like she was "wandering in the woods" with doctors who hadn't experienced her situation, she searched online and stumbled on communities like Inspire with members who had. The experience led her to start her own Alliance and the world's largest registry for advancing research on SCAD.
"Inspire is really an extension of yourself," she said. If designed well, online sites can foster what psychologist Keith Sawyer called group mind, a dynamic where participants balance their own voices with listening to others, maximizing community engagement in health. To achieve it, participants must have what Sawyer called a "blending of egos," which may be fostered when sites let users post anonymously. They must also share goals and open communication. The latter priority has driven Brian Loew, Inspire's CEO, to safeguard the privacy of health information exchanged on the site, often asking himself, "Would I be okay if a family member had this experience?"
The vibe isn't so familial on some of Facebook's health-focused groups. There, people might sense marketers and insurers peering over their shoulders. In 2018, a researcher discovered that companies could exploit personal information on a private Facebook community for BRCA-positive women. Members of the group started a nonprofit, the Light Collective, to help peer-to-peer support platforms improve their transparency.
PatientsLikeMe and Inspire nurture the shared experience by hosting pages on scores of diseases, allowing people to better understand treatment options for multiple conditions—and find others facing the same set of issues. Four in ten American adults have more than one chronic disease.
Sawyer observed that groups are further engaged when there's a baseline of common knowledge. To that end, some platforms take care in structuring dialogues among members to promote high-quality information, stepping in to moderate when necessary. On Inspire, members get emails when others reply to their posts, instead of instant messaging. The communication lag allows staff to notice misinformation and correct it. Facebook conversations occur in real-time among many more people; "moderation is almost impossible," said Leon.
Even on PatientsLikeMe and Inspire, deciding which content to police can be tough, as variations across individuals may result in conflicting but equally valid posts. Leon's left main artery was 90 percent blocked, requiring open heart surgery, whereas others with SCAD have angina, warranting a different approach. "It's a real range of experience," she explained. "That's probably the biggest challenge: supporting everyone where they are."
Critically, these sites don't treat illnesses. "If a member asks a medical question, we typically tell them to go to their doctor," said Loew, the Inspire CEO.
Increasingly, it may be the other way around.
The Patient Will See You Now
"Some doctors embrace the idea of an educated patient," said Loew. "The more information, the better." Others, he said, aren't thrilled about patients learning on their own.
"Doctors were behind the eight ball," said Shikha Jain, an oncologist in Chicago. "We were encouraged for years to avoid social media due to patient privacy issues. There's been a drastic shift in the last few years."
Jain recently co-founded IMPACT, a grassroots organization that networks with healthcare workers across Illinois for greater awareness of health issues. She thinks doctors must meet patients where they are—increasingly, online—and learn about the various platforms where patients connect. Doctors can then suggest credible online sources for their patients' conditions. Learning about different sites takes time, Jain said, "but that's the nature of being a physician in this day and age."
At stake is the efficiency of doctor-patient interactions. "I like when patients bring in research," Jain said. "It opens up the dialogue and lets them inform the decision-making process." Richardson, the cancer survivor, agreed. "We shouldn't make the physician the villain in this conversation." Interviewed over Zoom, she was engaging but quick to challenge the assumptions behind some questions; her toughness was palpable, molded by years of fighting disease—and the healthcare system. Many doctors are forced by that system into faster office visits, she said. "If patients help their doctor get to the heart of the issue in a shorter time, now we're going down a narrower road of tests."
These conversations could be enhanced by PatientsLikeMe's Doctor Visit Guide. It uses algorithms to consolidate health data that members track on the site into a short report they can share with their physicians. "It gives the doctor a richer data set to really see how a person has been doing," said Renfro-Wallace.
Doctors aren't the only ones benefiting from these sites.
Who Profits?
A few platforms like Inspire make money by connecting their members to drug companies, so they can participate in the companies' clinical trials to test out new therapies. A cynic might say the sites are just fronts for promoting the pharmaceuticals.
The need is real, though, as many clinical trials suffer from low participation, and the experimental treatments can improve health. The key for Loew, Inspire's CEO, is being transparent about his revenue model. "When you sign up, we assume you didn't read the fine print [in the terms of agreement]." So, when Inspire tells members about openings in trials, it's a reminder the site works with pharma.
"When I was first on Inspire, all of that was invisible to me," said Leon. "It didn't dawn on me for years." Richardson believes many don't notice pharma's involvement because they're preoccupied by their medical issues.
One way Inspire builds trust is by partnering with patient advocacy groups, which tend to be nonprofit and science-oriented, said Craig Lipset, the former head of clinical innovation for Pfizer. When he developed a rare lung disease, he joined the board of a foundation that partners with Inspire's platform. The section dedicated to his disease is emblazoned with his foundation's logo and colors. Contrast that with other sites that build communities at the direct behest of drug companies, he said.
Insurance companies are also eyeing these communities. Last month, PatientsLikeMe raised $26 million in financing from investors including Optum Ventures, which belongs to the same health care company that owns a leading health insurance company, UnitedHealthcare. PatientsLikeMe is an independent company, though, and data is shared with UnitedHealth only if patients provide consent. The site is using the influx of resources to gamify improvements in health, resembling programs run by UnitedHealth that assign nutrition and fitness "missions," with apps for tracking progress. Soon, PatientsLikeMe will roll out a smarter data tracking system that gives members actionable insights and prompts them to take actions based on their conditions, as well as competitions to motivate healthier behaviors.
Such as a race to vaccinate, perhaps.
Dealing with Misinformation
An advantage of health-focused communities is the intimacy of their gatherings, compared to behemoths like Facebook. Loew, Inspire's head, is mindful of Dunbar's rule: humans can manage only about 150 friends. Inspire's social network mapping suggests many connections among members, but of different strength; Loew hopes to keep his site's familial ambiance even while expanding membership. Renfro-Wallace is exploring video and voice-only meetings to enrich the shared experiences on PatientsLikeMe, while respecting members' privacy.
But a main driver of growth and engagement online is appealing to emotion rather than reason; witness Facebook during the pandemic. "We know that misinformation and scary things spread far more rapidly than something positive," said Ann Lewandowski, the executive director of Wisconsin Immunization Neighborhood, a coalition of health providers and associations countering vaccine hesitancy across the state.
"Facebook's moderation mechanism is terrible," she said. Vaccine advocates in her region who try to flag misinformation on Facebook often have their content removed because the site's algorithm associates their posts with the distortions they're trying to warn people about.
In the realm of health, where accessing facts can mean life or death—and where ad-based revenue models conflict with privacy needs—there's probably a ceiling on how large social media sites should scale. Loew views Inspire as co-existing, not competing with Facebook.
Propagandists had months to perfect campaigns to dissuade people from mRNA vaccines. But even Lewandowski's doctor was misinformed about vaccine side effects for her condition, multiple sclerosis. She sees potential for health-focused sites to convene more virtual forums, in which patient advocacy groups educate doctors and patients on vaccine safety.
Inspire is raising awareness about COVID vaccines through a member survey with an interactive data visualization. Sampling thousands of members, the survey found vaccines are tolerated well among patients with cancer, autoimmune issues, and other serious conditions. Analytics for online groups are evolving quickly, said Lipset. "Think about the acceleration in research when you take the emerging capability for aggregating health data and mash it up with patients engaged in sharing."
Lipset recently co-founded the Decentralized Trials and Research Alliance to accelerate clinical trials and make them more accessible to patients—even from home, without risking the virus. Sites like PatientsLikeMe share this commitment, collaborating with Duke's ALS Clinic to let patients join a trial from home with just two clinic visits. Synthetic control groups were created by PatientsLikeMe's algorithms, eliminating the need for a placebo arm, enabling faster results.
As for Richardson, the ovarian cancer patient, being online has given her another type of access—to experts. She was diagnosed this year with breast cancer. "This time is totally different," she said. On Twitter, she's been direct messaging cancer researchers, whose replies have informed her disease-management strategy. When her oncologists prescribed 33 radiation treatments, she counter-proposed upping the dosage over fewer treatments. Her doctors agreed, cutting unnecessary trips from home. "I'm immuno-compromised," she said. "It's like Russian roulette. You're crossing your finger you won't get the virus."
After years of sticking up for her own health, Richardson is now positioned to look out for others. She collaborated with the University of Illinois Cancer Center on a training module that lets patients take control of their health. She's sharing it online, in a virtual community near you. "It helps you make intelligent decisions," she said. "When you speak your physician's language, it shifts the power in the room."
When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.
Savannah Salazar (left) and her mother, Tracy Dixon-Salazaar, who earned a PhD in neurobiology in the quest for a treatment of her daughter's seizure disorder.
Twenty-eight years ago, Tracy Dixon-Salazaar woke to the sound of her daughter, two-year-old Savannah, in the midst of a medical emergency.
“I entered [Savannah’s room] to see her tiny little body jerking about violently in her bed,” Tracy said in an interview. “I thought she was choking.” When she and her husband frantically called 911, the paramedic told them it was likely that Savannah had had a seizure—a term neither Tracy nor her husband had ever heard before.
Over the next several years, Savannah’s seizures continued and worsened. By age five Savannah was having seizures dozens of times each day, and her parents noticed significant developmental delays. Savannah was unable to use the restroom and functioned more like a toddler than a five-year-old.
Doctors were mystified: Tracy and her husband had no family history of seizures, and there was no event—such as an injury or infection—that could have caused them. Doctors were also confused as to why Savannah’s seizures were happening so frequently despite trying different seizure medications.
Doctors eventually diagnosed Savannah with Lennox-Gaustaut Syndrome, or LGS, an epilepsy disorder with no cure and a poor prognosis. People with LGS are often resistant to several kinds of anti-seizure medications, and often suffer from developmental delays and behavioral problems. People with LGS also have a higher chance of injury as well as a higher chance of sudden unexpected death (SUDEP) due to the frequent seizures. In about 70 percent of cases, LGS has an identifiable cause such as a brain injury or genetic syndrome. In about 30 percent of cases, however, the cause is unknown.
Watching her daughter struggle through repeated seizures was devastating to Tracy and the rest of the family.
“This disease, it comes into your life. It’s uninvited. It’s unannounced and it takes over every aspect of your daily life,” said Tracy in an interview with Today.com. “Plus it’s attacking the thing that is most precious to you—your kid.”
Desperate to find some answers, Tracy began combing the medical literature for information about epilepsy and LGS. She enrolled in college courses to better understand the papers she was reading.
“Ironically, I thought I needed to go to college to take English classes to understand these papers—but soon learned it wasn’t English classes I needed, It was science,” Tracy said. When she took her first college science course, Tracy says, she “fell in love with the subject.”
Tracy was now a caregiver to Savannah, who continued to have hundreds of seizures a month, as well as a full-time student, studying late into the night and while her kids were at school, using classwork as “an outlet for the pain.”
“I couldn’t help my daughter,” Tracy said. “Studying was something I could do.”
Twelve years later, Tracy had earned a PhD in neurobiology.
After her post-doctoral training, Tracy started working at a lab that explored the genetics of epilepsy. Savannah’s doctors hadn’t found a genetic cause for her seizures, so Tracy decided to sequence her genome again to check for other abnormalities—and what she found was life-changing.
Tracy discovered that Savannah had a calcium channel mutation, meaning that too much calcium was passing through Savannah’s neural pathways, leading to seizures. The information made sense to Tracy: Anti-seizure medications often leech calcium from a person’s bones. When doctors had prescribed Savannah calcium supplements in the past to counteract these effects, her seizures had gotten worse every time she took the medication. Tracy took her discovery to Savannah’s doctor, who agreed to prescribe her a calcium blocker.
The change in Savannah was almost immediate.
Within two weeks, Savannah’s seizures had decreased by 95 percent. Once on a daily seven-drug regimen, she was soon weaned to just four, and then three. Amazingly, Tracy started to notice changes in Savannah’s personality and development, too.
“She just exploded in her personality and her talking and her walking and her potty training and oh my gosh she is just so sassy,” Tracy said in an interview.
Since starting the calcium blocker eleven years ago, Savannah has continued to make enormous strides. Though still unable to read or write, Savannah enjoys puzzles and social media. She’s “obsessed” with boys, says Tracy. And while Tracy suspects she’ll never be able to live independently, she and her daughter can now share more “normal” moments—something she never anticipated at the start of Savannah’s journey with LGS. While preparing for an event, Savannah helped Tracy get ready.
“We picked out a dress and it was the first time in our lives that we did something normal as a mother and a daughter,” she said. “It was pretty cool.”
A robot server, controlled remotely by a disabled worker, delivers drinks to patrons at the DAWN cafe in Tokyo.
A sleek, four-foot tall white robot glides across a cafe storefront in Tokyo’s Nihonbashi district, holding a two-tiered serving tray full of tea sandwiches and pastries. The cafe’s patrons smile and say thanks as they take the tray—but it’s not the robot they’re thanking. Instead, the patrons are talking to the person controlling the robot—a restaurant employee who operates the avatar from the comfort of their home.
It’s a typical scene at DAWN, short for Diverse Avatar Working Network—a cafe that launched in Tokyo six years ago as an experimental pop-up and quickly became an overnight success. Today, the cafe is a permanent fixture in Nihonbashi, staffing roughly 60 remote workers who control the robots remotely and communicate to customers via a built-in microphone.
More than just a creative idea, however, DAWN is being hailed as a life-changing opportunity. The workers who control the robots remotely (known as “pilots”) all have disabilities that limit their ability to move around freely and travel outside their homes. Worldwide, an estimated 16 percent of the global population lives with a significant disability—and according to the World Health Organization, these disabilities give rise to other problems, such as exclusion from education, unemployment, and poverty.
These are all problems that Kentaro Yoshifuji, founder and CEO of Ory Laboratory, which supplies the robot servers at DAWN, is looking to correct. Yoshifuji, who was bedridden for several years in high school due to an undisclosed health problem, launched the company to help enable people who are house-bound or bedridden to more fully participate in society, as well as end the loneliness, isolation, and feelings of worthlessness that can sometimes go hand-in-hand with being disabled.
“It’s heartbreaking to think that [people with disabilities] feel they are a burden to society, or that they fear their families suffer by caring for them,” said Yoshifuji in an interview in 2020. “We are dedicating ourselves to providing workable, technology-based solutions. That is our purpose.”
Shota Kuwahara, a DAWN employee with muscular dystrophy. Ory Labs, Inc.
Shota, Kuwahara, a DAWN employee with muscular dystrophy, agrees. "There are many difficulties in my daily life, but I believe my life has a purpose and is not being wasted," he says. "Being useful, able to help other people, even feeling needed by others, is so motivational."