After a Diagnosis, Patients Are Finding Solace—and Empowerment—in a Sensitive Corner of Social Media
Matt Fuchs is a health and science writer based in Silver Spring, Maryland. He has written on a variety of health topics, including profiles of older athletes defying their ages, for publications such as The Washington Post, The Washington Post Magazine, and Medium's The Startup. He is also a science fiction author. Follow him on Twitter, @fuchswriter.
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."
Matt Fuchs is a health and science writer based in Silver Spring, Maryland. He has written on a variety of health topics, including profiles of older athletes defying their ages, for publications such as The Washington Post, The Washington Post Magazine, and Medium's The Startup. He is also a science fiction author. Follow him on Twitter, @fuchswriter.
New Blood Test Can Detect Lymphoma Cells Before a Tumor Grows Back
David Kurtz making DNA sequencing libraries in his lab.
When David M. Kurtz was doing his clinical fellowship at Stanford University Medical Center in 2009, specializing in lymphoma treatments, he found himself grappling with a question no one could answer. A typical regimen for these blood cancers prescribed six cycles of chemotherapy, but no one knew why. "The number seemed to be drawn out of a hat," Kurtz says. Some patients felt much better after just two doses, but had to endure the toxic effects of the entire course. For some elderly patients, the side effects of chemo are so harsh, they alone can kill. Others appeared to be cancer-free on the CT scans after the requisite six but then succumbed to it months later.
"Anecdotally, one patient decided to stop therapy after one dose because he felt it was so toxic that he opted for hospice instead," says Kurtz, now an oncologist at the center. "Five years down the road, he was alive and well. For him, just one dose was enough." Others would return for their one-year check up and find that their tumors grew back. Kurtz felt that while CT scans and MRIs were powerful tools, they weren't perfect ones. They couldn't tell him if there were any cancer cells left, stealthily waiting to germinate again. The scans only showed the tumor once it was back.
Blood cancers claim about 68,000 people a year, with a new diagnosis made about every three minutes, according to the Leukemia Research Foundation. For patients with B-cell lymphoma, which Kurtz focuses on, the survival chances are better than for some others. About 60 percent are cured, but the remaining 40 percent will relapse—possibly because they will have a negative CT scan, but still harbor malignant cells. "You can't see this on imaging," says Michael Green, who also treats blood cancers at University of Texas MD Anderson Medical Center.
The new blood test is sensitive enough to spot one cancerous perpetrator amongst one million other DNA molecules.
Kurtz wanted a better diagnostic tool, so he started working on a blood test that could capture the circulating tumor DNA or ctDNA. For that, he needed to identify the specific mutations typical for B-cell lymphomas. Working together with another fellow PhD student Jake Chabon, Kurtz finally zeroed-in on the tumor's genetic "appearance" in 2017—a pair of specific mutations sitting in close proximity to each other—a rare and telling sign. The human genome contains about 3 billion base pairs of nucleotides—molecules that compose genes—and in case of the B-cell lymphoma cells these two mutations were only a few base pairs apart. "That was the moment when the light bulb went on," Kurtz says.
The duo formed a company named Foresight Diagnostics, focusing on taking the blood test to the clinic. But knowing the tumor's mutational signature was only half the process. The other was fishing the tumor's DNA out of patients' bloodstream that contains millions of other DNA molecules, explains Chabon, now Foresight's CEO. It would be like looking for an escaped criminal in a large crowd. Kurtz and Chabon solved the problem by taking the tumor's "mug shot" first. Doctors would take the biopsy pre-treatment and sequence the tumor, as if taking the criminal's photo. After treatments, they would match the "mug shot" to all DNA molecules derived from the patient's blood sample to see if any molecular criminals managed to escape the chemo.
Foresight isn't the only company working on blood-based tumor detection tests, which are dubbed liquid biopsies—other companies such as Natera or ArcherDx developed their own. But in a recent study, the Foresight team showed that their method is significantly more sensitive in "fishing out" the cancer molecules than existing tests. Chabon says that this test can detect circulating tumor DNA in concentrations that are nearly 100 times lower than other methods. Put another way, it's sensitive enough to spot one cancerous perpetrator amongst one million other DNA molecules.
"It increases the sensitivity of detection and really catches most patients who are going to progress," says Green, the University of Texas oncologist who wasn't involved in the study, but is familiar with the method. It would also allow monitoring patients during treatment and making better-informed decisions about which therapy regimens would be most effective. "It's a minimally invasive test," Green says, and "it gives you a very high confidence about what's going on."
Having shown that the test works well, Kurtz and Chabon are planning a new trial in which oncologists would rely on their method to decide when to stop or continue chemo. They also aim to extend their test to detect other malignancies such as lung, breast or colorectal cancers. The latest genome sequencing technologies have sequenced and catalogued over 2,500 different tumor types, says Chabon, which gives the team the opportunity to create more molecular "mug shots."
The team hopes that that their blood cancer test will become available to patients within about five years, making doctors' job easier, and not only at the biological level. "When I tell patients, "good news, your cancer is in remission', they ask me, 'does it mean I'm cured?'" Kurtz says. "Right now I can't answer this question because I don't know—but I would like to." His company's test, he hopes, will enable him to reply with certainty. He'd very much like to have the power of that foresight.
The First Mass-Produced Solar Car Is Coming Soon, Sparking Excitement and Uncertainty
Reporter Michaela Haas takes Aptera's Sol car out for a test drive in San Diego, Calif.
The white two-seater car that rolls down the street in the Sorrento Valley of San Diego looks like a futuristic batmobile, with its long aerodynamic tail and curved underbelly. Called 'Sol' (Spanish for "sun"), it runs solely on solar and could be the future of green cars. Its maker, the California startup Aptera, has announced the production of Sol, the world's first mass-produced solar vehicle, by the end of this year. Aptera co-founder Chris Anthony points to the sky as he says, "On this sunny California day, there is ample fuel. You never need to charge the car."
If you live in a sunny state like California or Florida, you might never need to plug in the streamlined Sol because the solar panels recharge while driving and parked. Its 60-mile range is more than the average commuter needs. For cloudy weather, battery packs can be recharged electronically for a range of up to 1,000 miles. The ultra-aerodynamic shape made of lightweight materials such as carbon, Kevlar, and hemp makes the Sol four times more energy-efficient than a Tesla, according to Aptera. "The material is seven times stronger than steel and even survives hail or an angry ex-girlfriend," Anthony promises.
Co-founder Steve Fambro opens the Sol's white doors that fly upwards like wings and I get inside for a test drive. Two dozen square solar panels, each the size of a large square coaster, on the roof, front, and tail power the car. The white interior is spartan; monitors have replaced mirrors and the dashboard. An engineer sits in the driver's seat, hits the pedal, and the low-drag two-seater zooms from 0 to 60 in 3.5 seconds.
It feels like sitting in a race car because the two-seater is so low to the ground but the car is built to go no faster than 100 or 110 mph. The finished car will weigh less than 1,800 pounds, about half of the smallest Tesla. The average car, by comparison, weighs more than double that. "We've built it primarily for energy efficiency," Steve Fambro says, explaining why the Sol has only three wheels. It's technically an "auto-cycle," a hybrid between a motorcycle and a car, but Aptera's designers are also working to design a four-seater.
There has never been a lack of grand visions for the future of the automobile, but until these solar cars actually hit the streets, nobody knows how the promises will hold up.
Transportation is currently the biggest source of greenhouse gases. Developing an efficient solar car that does not burden the grid has been the dream of innovators for decades. Every other year, dozens of innovators race their self-built solar cars 2,000 miles through the Australian desert.
More effective solar panels are finally making the dream mass-compatible, but just like other innovative car ideas, Aptera's vision has been plagued with money problems. Anthony and Fambro were part of the original crew that founded Aptera in 2006 and worked on the first prototype around the same time Tesla built its first roadster, but Aptera went bankrupt in 2011. Anthony and Fambro left a year before the bankruptcy and went on to start other companies. Among other projects, Fambro developed the first USDA organic vertical farm in the United Arab Emirates, and Anthony built a lithium battery company, before the two decided to buy Aptera back. Without a billionaire such as Elon Musk bankrolling the risky process of establishing a whole new car production system from scratch, the huge production costs are almost insurmountable.
But Aptera's founders believe they have found solutions for the entire production process as well as the car design. Most parts of the Sol's body can be made by 3D printers and assembled like a Lego kit. If this makes you think of a toy car, Anthony assures potential buyers that the car aced stress tests and claims it's safer than any vehicle on the market, "because the interior is shaped like an egg and if there is an impact, the pressure gets distributed equally." However, Aptera has yet to release crash test safety data so outside experts cannot evaluate their claims.
Instead of building a huge production facility, Anthony and Fambro envision "micro-factories," each less than 10,000 square feet, where a small crew can assemble cars on demand wherever the orders are highest, be it in California, Canada, or China.
If a part of the Sol breaks, Aptera promises to send replacement parts to any corner of the world within 24 hours, with instructions. So a mechanic in a rural corner in Arkansas or China who never worked on a solar car before simply needs to download the instructions and replace the broken part. At least that's the idea. "The material does not rust nor fatigue," Fambro promises. "You can pass the car onto your grandchildren. When more efficient solar panels hit the market, we simply replace them."
More than 11,000 potential buyers have already signed up; the cheapest model costs around $26,000 USD and Aptera expects the first cars to ship by the end of the year.
Two other solar carmakers are vying for the pole position in the race to be the first to market: The German startup Sono has also announced it will also produce its first solar car by the end of this year. The price tag for the basic model is also around $26,000, but its concept is very different. From the outside, the Sion looks like a conservative minivan for a family; only a closer look reveals that the dark exterior is made of solar panels. Sono, too, nearly went bankrupt a few years ago and was saved through a crowdfunding campaign by enthusiastic fans.
Meanwhile, Norwegian company Lightyear wants to produce a sleek solar-powered luxury sedan by the end of the year, but its price of around $180,000 makes it unaffordable for most buyers.
There has never been a lack of grand visions for the future of the automobile, but until these solar cars actually hit the streets, nobody knows how the promises will hold up. How often will the cars need to be repaired? What happens when snow and ice cover the solar panels? Also, you can't park the car in a garage if you need the sun to charge it.
Critics, including students at the Solar Car team at the University of Michigan, say that mounting solar panels on a moving vehicle will never yield the most efficient results compared to static panels. Also, they are quick to point out that no company has managed to overcome the production hurdles yet. Others in the field also wonder how well the solar panels will actually work.
"It's important to realize that the solar mileage claims by these companies are likely the theoretical best case scenario but in the real world, solar range will be significantly less when you factor in shading, parking in garages, and geographies with lower solar irradiance," says Evan Stumpges, the team coordinator for the American Solar Challenge, a competition in which enthusiasts build and race solar-powered cars. "The encouraging thing is that I have seen videos of real working prototypes for each of these vehicles which is a key accomplishment. That said, I believe the biggest hurdle these companies have yet to face is successfully ramping up to volume production and understanding what their profitability point will be for selling the vehicles once production has stabilized."
Professor Daniel M. Kammen, the founding director of the Renewable and Appropriate Energy Laboratory at the University of California, Berkeley, and one of the world's foremost experts on renewable energy, believes that the technical challenges have been solved, and that solar cars have real advantages over electric vehicles.
"This is the right time to be bullish. Cutting out the charging is a natural solution for long rides," he says. "These vehicles are essentially solar panels and batteries on wheels. These are now record low-cost and can be built from sustainable materials." Apart from Aptera's no-charge technology, he appreciates the move toward no-conflict materials. "Not only is the time ripe but the youth movement is pushing toward conflict-free material and reducing resource waste....A low-cost solar fleet could be really interesting in relieving burden on the grid, or you could easily imagine a city buying a bunch of them and connecting them with mass transit." While he has followed all three new solar companies with interest, he has already ordered an Aptera car for himself, "because it's American and it looks the most different."
After taking a spin in the Sol, it is startling to switch back into a regular four-seater. Rolling out of Aptera's parking lot onto the freeway next to all the oversized gas guzzlers that need to stop every couple of hundreds of miles to fill up, one can't help but think: We've just taken a trip into the future.