After a Diagnosis, Patients Are Finding Solace—and Empowerment—in a Sensitive Corner of Social Media
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."
Autonomous, indoor farming gives a boost to crops
The glass-encased cabinet looks like a display meant to hold reasonably priced watches, or drugstore beauty creams shipped from France. But instead of this stagnant merchandise, each of its five shelves is overgrown with leaves — moss-soft pea sprouts, spikes of Lolla rosa lettuces, pale bok choy, dark kale, purple basil or red-veined sorrel or green wisps of dill. The glass structure isn’t a cabinet, but rather a “micro farm.”
The gadget is on display at the Richmond, Virginia headquarters of Babylon Micro-Farms, a company that aims to make indoor farming in the U.S. more accessible and sustainable. Babylon’s soilless hydroponic growing system, which feeds plants via nutrient-enriched water, allows chefs on cruise ships, cafeterias and elsewhere to provide home-grown produce to patrons, just seconds after it’s harvested. Currently, there are over 200 functioning systems, either sold or leased to customers, and more of them are on the way.
The chef-farmers choose from among 45 types of herb and leafy-greens seeds, plop them into grow trays, and a few weeks later they pick and serve. While success is predicated on at least a small amount of these humans’ care, the systems are autonomously surveilled round-the-clock from Babylon’s base of operations. And artificial intelligence is helping to run the show.
Babylon piloted the use of specialized cameras that take pictures in different spectrums to gather some less-obvious visual data about plants’ wellbeing and alert people if something seems off.
Imagine consistently perfect greens and tomatoes and strawberries, grown hyper-locally, using less water, without chemicals or environmental contaminants. This is the hefty promise of controlled environment agriculture (CEA) — basically, indoor farms that can be hydroponic, aeroponic (plant roots are suspended and fed through misting), or aquaponic (where fish play a role in fertilizing vegetables). But whether they grow 4,160 leafy-green servings per year, like one Babylon farm, or millions of servings, like some of the large, centralized facilities starting to supply supermarkets across the U.S., they seek to minimize failure as much as possible.
Babylon’s soilless hydroponic growing system
Courtesy Babylon Micro-Farms
Here, AI is starting to play a pivotal role. CEA growers use it to help “make sense of what’s happening” to the plants in their care, says Scott Lowman, vice president of applied research at the Institute for Advanced Learning and Research (IALR) in Virginia, a state that’s investing heavily in CEA companies. And although these companies say they’re not aiming for a future with zero human employees, AI is certainly poised to take a lot of human farming intervention out of the equation — for better and worse.
Most of these companies are compiling their own data sets to identify anything that might block the success of their systems. Babylon had already integrated sensor data into its farms to measure heat and humidity, the nutrient content of water, and the amount of light plants receive. Last year, they got a National Science Foundation grant that allowed them to pilot the use of specialized cameras that take pictures in different spectrums to gather some less-obvious visual data about plants’ wellbeing and alert people if something seems off. “Will this plant be healthy tomorrow? Are there things…that the human eye can't see that the plant starts expressing?” says Amandeep Ratte, the company’s head of data science. “If our system can say, Hey, this plant is unhealthy, we can reach out to [users] preemptively about what they’re doing wrong, or is there a disease at the farm?” Ratte says. The earlier the better, to avoid crop failures.
Natural light accounts for 70 percent of Greenswell Growers’ energy use on a sunny day.
Courtesy Greenswell Growers
IALR’s Lowman says that other CEA companies are developing their AI systems to account for the different crops they grow — lettuces come in all shapes and sizes, after all, and each has different growing needs than, for example, tomatoes. The ways they run their operations differs also. Babylon is unusual in its decentralized structure. But centralized growing systems with one main location have variabilities, too. AeroFarms, which recently declared bankruptcy but will continue to run its 140,000-square foot vertical operation in Danville, Virginia, is entirely enclosed and reliant on the intense violet glow of grow lights to produce microgreens.
Different companies have different data needs. What data is essential to AeroFarms isn’t quite the same as for Greenswell Growers located in Goochland County, Virginia. Raising four kinds of lettuce in a 77,000-square-foot automated hydroponic greenhouse, the vagaries of naturally available light, which accounts for 70 percent of Greenswell’s energy use on a sunny day, affect operations. Their tech needs to account for “outside weather impacts,” says president Carl Gupton. “What adjustments do we have to make inside of the greenhouse to offset what's going on outside environmentally, to give that plant optimal conditions? When it's 85 percent humidity outside, the system needs to do X, Y and Z to get the conditions that we want inside.”
AI will help identify diseases, as well as when a plant is thirsty or overly hydrated, when it needs more or less calcium, phosphorous, nitrogen.
Nevertheless, every CEA system has the same core needs — consistent yield of high quality crops to keep up year-round supply to customers. Additionally, “Everybody’s got the same set of problems,” Gupton says. Pests may come into a facility with seeds. A disease called pythium, one of the most common in CEA, can damage plant roots. “Then you have root disease pressures that can also come internally — a change in [growing] substrate can change the way the plant performs,” Gupton says.
AI will help identify diseases, as well as when a plant is thirsty or overly hydrated, when it needs more or less calcium, phosphorous, nitrogen. So, while companies amass their own hyper-specific data sets, Lowman foresees a time within the next decade “when there will be some type of [open-source] database that has the most common types of plant stress identified” that growers will be able to tap into. Such databases will “create a community and move the science forward,” says Lowman.
In fact, IALR is working on assembling images for just such a database now. On so-called “smart tables” inside an Institute lab, a team is growing greens and subjects them to various stressors. Then, they’re administering treatments while taking images of every plant every 15 minutes, says Lowman. Some experiments generate 80,000 images; the challenge lies in analyzing and annotating the vast trove of them, marking each one to reflect outcome—for example increasing the phosphate delivery and the plant’s response to it. Eventually, they’ll be fed into AI systems to help them learn.
For all the enthusiasm surrounding this technology, it’s not without downsides. Training just one AI system can emit over 250,000 pounds of carbon dioxide, according to MIT Technology Review. AI could also be used “to enhance environmental benefit for CEA and optimize [its] energy consumption,” says Rozita Dara, a computer science professor at the University of Guelph in Canada, specializing in AI and data governance, “but we first need to collect data to measure [it].”
The chef-farmers can choose from 45 types of herb and leafy-greens seeds.
Courtesy Babylon Micro-Farms
Any system connected to the Internet of Things is also vulnerable to hacking; if CEA grows to the point where “there are many of these similar farms, and you're depending on feeding a population based on those, it would be quite scary,” Dara says. And there are privacy concerns, too, in systems where imaging is happening constantly. It’s partly for this reason, says Babylon’s Ratte, that the company’s in-farm cameras all “face down into the trays, so the only thing [visible] is pictures of plants.”
Tweaks to improve AI for CEA are happening all the time. Greenswell made its first harvest in 2022 and now has annual data points they can use to start making more intelligent choices about how to feed, water, and supply light to plants, says Gupton. Ratte says he’s confident Babylon’s system can already “get our customers reliable harvests. But in terms of how far we have to go, it's a different problem,” he says. For example, if AI could detect whether the farm is mostly empty—meaning the farm’s user hasn’t planted a new crop of greens—it can alert Babylon to check “what's going on with engagement with this user?” Ratte says. “Do they need more training? Did the main person responsible for the farm quit?”
Lowman says more automation is coming, offering greater ability for systems to identify problems and mitigate them on the spot. “We still have to develop datasets that are specific, so you can have a very clear control plan, [because] artificial intelligence is only as smart as what we tell it, and in plant science, there's so much variation,” he says. He believes AI’s next level will be “looking at those first early days of plant growth: when the seed germinates, how fast it germinates, what it looks like when it germinates.” Imaging all that and pairing it with AI, “can be a really powerful tool, for sure.”
Scientists make progress with growing organs for transplants
Story by Big Think
For over a century, scientists have dreamed of growing human organs sans humans. This technology could put an end to the scarcity of organs for transplants. But that’s just the tip of the iceberg. The capability to grow fully functional organs would revolutionize research. For example, scientists could observe mysterious biological processes, such as how human cells and organs develop a disease and respond (or fail to respond) to medication without involving human subjects.
Recently, a team of researchers from the University of Cambridge has laid the foundations not just for growing functional organs but functional synthetic embryos capable of developing a beating heart, gut, and brain. Their report was published in Nature.
The organoid revolution
In 1981, scientists discovered how to keep stem cells alive. This was a significant breakthrough, as stem cells have notoriously rigorous demands. Nevertheless, stem cells remained a relatively niche research area, mainly because scientists didn’t know how to convince the cells to turn into other cells.
Then, in 1987, scientists embedded isolated stem cells in a gelatinous protein mixture called Matrigel, which simulated the three-dimensional environment of animal tissue. The cells thrived, but they also did something remarkable: they created breast tissue capable of producing milk proteins. This was the first organoid — a clump of cells that behave and function like a real organ. The organoid revolution had begun, and it all started with a boob in Jello.
For the next 20 years, it was rare to find a scientist who identified as an “organoid researcher,” but there were many “stem cell researchers” who wanted to figure out how to turn stem cells into other cells. Eventually, they discovered the signals (called growth factors) that stem cells require to differentiate into other types of cells.
For a human embryo (and its organs) to develop successfully, there needs to be a “dialogue” between these three types of stem cells.
By the end of the 2000s, researchers began combining stem cells, Matrigel, and the newly characterized growth factors to create dozens of organoids, from liver organoids capable of producing the bile salts necessary for digesting fat to brain organoids with components that resemble eyes, the spinal cord, and arguably, the beginnings of sentience.
Synthetic embryos
Organoids possess an intrinsic flaw: they are organ-like. They share some characteristics with real organs, making them powerful tools for research. However, no one has found a way to create an organoid with all the characteristics and functions of a real organ. But Magdalena Żernicka-Goetz, a developmental biologist, might have set the foundation for that discovery.
Żernicka-Goetz hypothesized that organoids fail to develop into fully functional organs because organs develop as a collective. Organoid research often uses embryonic stem cells, which are the cells from which the developing organism is created. However, there are two other types of stem cells in an early embryo: stem cells that become the placenta and those that become the yolk sac (where the embryo grows and gets its nutrients in early development). For a human embryo (and its organs) to develop successfully, there needs to be a “dialogue” between these three types of stem cells. In other words, Żernicka-Goetz suspected the best way to grow a functional organoid was to produce a synthetic embryoid.
As described in the aforementioned Nature paper, Żernicka-Goetz and her team mimicked the embryonic environment by mixing these three types of stem cells from mice. Amazingly, the stem cells self-organized into structures and progressed through the successive developmental stages until they had beating hearts and the foundations of the brain.
“Our mouse embryo model not only develops a brain, but also a beating heart [and] all the components that go on to make up the body,” said Żernicka-Goetz. “It’s just unbelievable that we’ve got this far. This has been the dream of our community for years and major focus of our work for a decade and finally we’ve done it.”
If the methods developed by Żernicka-Goetz’s team are successful with human stem cells, scientists someday could use them to guide the development of synthetic organs for patients awaiting transplants. It also opens the door to studying how embryos develop during pregnancy.