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."
Send in the Robots: A Look into the Future of Firefighting
April in Paris stood still. Flames engulfed the beloved Notre Dame Cathedral as the world watched, horrified, in 2019. The worst looked inevitable when firefighters were forced to retreat from the out-of-control fire.
But the Paris Fire Brigade had an ace up their sleeve: Colossus, a firefighting robot. The seemingly indestructible tank-like machine ripped through the blaze with its motorized water cannon. It was able to put out flames in places that would have been deadly for firefighters.
Firefighting is entering a new era, driven by necessity. Conventional methods of managing fires have been no match for the fiercer, more expansive fires being triggered by climate change, urban sprawl, and susceptible wooded areas.
Robots have been a game-changer. Inspired by Paris, the Los Angeles Fire Department (LAFD) was the first in the U.S. to deploy a firefighting robot in 2021, the Thermite Robotics System 3 – RS3, for short.
RS3 is a 3,500-pound turbine on a crawler—the size of a Smart car—with a 36.8 horsepower engine that can go for 20 hours without refueling. It can plow through hazardous terrain, move cars from its path, and pull an 8,000-pound object from a fire.
All that while spurting 2,500 gallons of water per minute with a rear exhaust fan clearing the smoke. At a recent trade show, RS3 was billed as equivalent to 10 firefighters. The Los Angeles Times referred to it as “a droid on steroids.”
Robots such as the Thermite RS3 can plow through hazardous terrain and pull an 8,000-pound object from a fire.
Los Angeles Fire Department
The advantage of the robot is obvious. Operated remotely from a distance, it greatly reduces an emergency responder’s exposure to danger, says Wade White, assistant chief of the LAFD. The robot can be sent into airplane fires, nuclear reactors, hazardous areas with carcinogens (think East Palestine, Ohio), or buildings where a roof collapse is imminent.
Advances for firefighters are taking many other forms as well. Fibers have been developed that make the firefighter’s coat lighter and more protective from carcinogens. New wearable devices track firefighters’ biometrics in real time so commanders can monitor their heat stress and exertion levels. A sensor patch is in development which takes readings every four seconds to detect dangerous gases such as methane and carbon dioxide. A sonic fire extinguisher is being explored that uses low frequency soundwaves to remove oxygen from air molecules without unhealthy chemical compounds.
The demand for this technology is only increasing, especially with the recent rise in wildfires. In 2021, fires were responsible for 3,800 deaths and 14,700 injuries of civilians in this country. Last year, 68,988 wildfires burned down 7.6 million acres. Whether the next generation of firefighting can address these new challenges could depend on special cameras, robots of the aerial variety, AI and smart systems.
Fighting fire with cameras
Another key innovation for firefighters is a thermal imaging camera (TIC) that improves visibility through smoke. “At a fire, you might not see your hand in front of your face,” says White. “Using the TIC screen, you can find the door to get out safely or see a victim in the corner.” Since these cameras were introduced in the 1990s, the price has come down enough (from $10,000 or more to about $700) that every LAFD firefighter on duty has been carrying one since 2019, says White.
TICs are about the size of a cell phone. The camera can sense movement and body heat so it is ideal as a search tool for people trapped in buildings. If a firefighter has not moved in 30 seconds, the motion detector picks that up, too, and broadcasts a distress signal and directional information to others.
To enable firefighters to operate the camera hands-free, the newest TICs can attach inside a helmet. The firefighter sees the images inside their mask.
TICs also can be mounted on drones to get a bird’s-eye, 360 degree view of a disaster or scout for hot spots through the smoke. In addition, the camera can take photos to aid arson investigations or help determine the cause of a fire.
More help From above
Firefighters prefer the term “unmanned aerial systems” (UAS) to drones to differentiate them from military use.
A UAS carrying a camera can provide aerial scene monitoring and topography maps to help fire captains deploy resources more efficiently. At night, floodlights from the drone can illuminate the landscape for firefighters. They can drop off payloads of blankets, parachutes, life preservers or radio devices for stranded people to communicate, too. And like the robot, the UAS reduces risks for ground crews and helicopter pilots by limiting their contact with toxic fumes, hazardous chemicals, and explosive materials.
“The nice thing about drones is that they perform multiple missions at once,” says Sean Triplett, team lead of fire and aviation management, tools and technology at the Forest Service.
Experts predict we’ll see swarms of drones dropping water and fire retardant on burning buildings and forests in the near future.
The UAS is especially helpful during wildfires because it can track fires, get ahead of wind currents and warn firefighters of wind shifts in real time. The U.S. Forest Service also uses long endurance, solar-powered drones that can fly for up to 30 days at a time to detect early signs of wildfire. Wildfires are no longer seasonal in California – they are a year-long threat, notes Thanh Nguyen, fire captain at the Orange County Fire Authority.
In March, Nguyen’s crew deployed a drone to scope out a huge landslide following torrential rains in San Clemente, CA. Emergency responders used photos and videos from the drone to survey the evacuated area, enabling them to stay clear of ground on the hillside that was still sliding.
Improvements in drone batteries are enabling them to fly for longer with heavier payloads. Experts predict we’ll see swarms of drones dropping water and fire retardant on burning buildings and forests in the near future.
AI to the rescue
The biggest peril for a firefighter is often what they don’t see coming. Flashovers are a leading cause of firefighter deaths, for example. They occur when flammable materials in an enclosed area ignite almost instantaneously. Or dangerous backdrafts can happen when a firefighter opens a window or door; the air rushing in can ignite a fire without warning.
The Fire Fighting Technology Group at the National Institute of Standards and Technology (NIST) is developing tools and systems to predict these potentially lethal events with computer models and artificial intelligence.
Partnering with other institutions, NIST researchers developed the Flashover Prediction Neural Network (FlashNet) after looking at common house layouts and running sets of scenarios through a machine-learning model. In the lab, FlashNet was able to predict a flashover 30 seconds before it happened with 92.1% success. When ready for release, the technology will be bundled with sensors that are already installed in buildings, says Anthony Putorti, leader of the NIST group.
The NIST team also examined data from hundreds of backdrafts as a basis for a machine-learning model to predict them. In testing chambers the model predicted them correctly 70.8% of the time; accuracy increased to 82.4% when measures of backdrafts were taken in more positions at different heights in the chambers. Developers are working on how to integrate the AI into a small handheld device that can probe the air of a room through cracks around a door or through a created opening, Putorti says. This way, the air can be analyzed with the device to alert firefighters of any significant backdraft risk.
Early wildfire detection technologies based on AI are in the works, too. The Forest Service predicts the acreage burned each year during wildfires will more than triple in the next 80 years. By gathering information on historic fires, weather patterns, and topography, says White, AI can help firefighters manage wildfires before they grow out of control and create effective evacuation plans based on population data and fire patterns.
The future is connectivity
We are in our infancy with “smart firefighting,” says Casey Grant, executive director emeritus of the Fire Protection Research Foundation. Grant foresees a new era of cyber-physical systems for firefighters—a massive integration of wireless networks, advanced sensors, 3D simulations, and cloud services. To enhance teamwork, the system will connect all branches of emergency responders—fire, emergency medical services, law enforcement.
FirstNet (First Responder Network Authority) now provides a nationwide high-speed broadband network with 5G capabilities for first responders through a terrestrial cell network. Battling wildfires, however, the Forest Service needed an alternative because they don’t always have access to a power source. In 2022, they contracted with Aerostar for a high altitude balloon (60,000 feet up) that can extend cell phone power and LTE. “It puts a bubble of connectivity over the fire to hook in the internet,” Triplett explains.
A high altitude balloon, 60,000 feet high, can extend cell phone power and LTE, putting a "bubble" of internet connectivity over fires.
Courtesy of USDA Forest Service
Advances in harvesting, processing and delivering data will improve safety and decision-making for firefighters, Grant sums up. Smart systems may eventually calculate fire flow paths and make recommendations about the best ways to navigate specific fire conditions. NIST’s plan to combine FlashNet with sensors is one example.
The biggest challenge is developing firefighting technology that can work across multiple channels—federal, state, local and tribal systems as well as for fire, police and other emergency services— in any location, says Triplett. “When there’s a wildfire, there are no political boundaries,” he says. “All hands are on deck.”
New device can diagnose concussions using AI
For a long time after Mary Smith hit her head, she was not able to function. Test after test came back normal, so her doctors ruled out the concussion, but she knew something was wrong. Finally, when she took a test with a novel EyeBOX device, recently approved by the FDA, she learned she indeed had been dealing with the aftermath of a concussion.
“I felt like even my husband and doctors thought I was faking it or crazy,” recalls Smith, who preferred not to disclose her real name. “When I took the EyeBOX test it showed that my eyes were not moving together and my BOX score was abnormal.” To her diagnosticians, scientists at the Minneapolis-based company Oculogica who developed the EyeBOX, these markers were concussion signs. “I cried knowing that finally someone could figure out what was wrong with me and help me get better,” she says.
Concussion affects around 42 million people worldwide. While it’s increasingly common in the news because of sports injuries, anything that causes damage to the head, from a fall to a car accident, can result in a concussion. The sudden blow or jolt can disrupt the normal way the brain works. In the immediate aftermath, people may suffer from headaches, lose consciousness and experience dizziness, confusion and vomiting. Some recover but others have side effects that can last for years, particularly affecting memory and concentration.
There is no simple standard-of-care test to confirm a concussion or rule it out. Neither do they appear on MRI and CT scans. Instead, medical professionals use more indirect approaches that test symptoms of concussions, such as assessments of patients’ learning and memory skills, ability to concentrate and problem solving. They also look at balance and coordination. Most tests are in the form of questionnaires or symptom checklists. Consequently, they have limitations, can be biased and may miss a concussion or produce a false positive. Some people suspected of having a concussion may ordinarily have difficulties with literary and problem-solving tests because of language challenges or education levels.
Another problem with current tests is that patients, particularly soldiers who want to return to combat and athletes who would like to keep competing, could try and hide their symptoms to avoid being diagnosed with a brain injury. Trauma physicians who work with concussion patients have the need for a tool that is more objective and consistent.
“This type of assessment doesn’t rely on the patient's education level, willingness to follow instructions or cooperation. You can’t game this.” -- Uzma Samadani, founder of Oculogica
“The importance of having an objective measurement tool for the diagnosis of concussion is of great importance,” says Douglas Powell, associate professor of biomechanics at the University of Memphis, with research interests in sports injury and concussion. “While there are a number of promising systems or metrics, we have yet to develop a system that is portable, accessible and objective for use on the sideline and in the clinic. The EyeBOX may be able to address these issues, though time will be the ultimate test of performance.”
The EyeBOX as a window inside the brain
Using eye movements to diagnose a concussion has emerged as a promising technique since around 2010. Oculogica combined eye movements with AI to develop the EyeBOX to develop an unbiased objective diagnostic tool.
“What’s so great about this type of assessment is it doesn’t rely on the patient's education level, willingness to follow instructions or cooperation,” says Uzma Samadani, a neurosurgeon and brain injury researcher at the University of Minnesota, who founded Oculogica. “You can’t game this. It assesses functions that are prompted by your brain.”
In 2010, Samadani was working on a clinical trial to improve the outcome of brain injuries. The team needed some way to measure if seriously brain injured patients were improving. One thing patients could do was watch TV. So Samadani designed and patented an AI-based algorithm that tracks the relationship between eye movement and concussion.
The EyeBOX test requires patients to watch movie or music clips for 220 seconds. An eye tracking camera records subconscious eye movements, tracking eye positions 500 times per seconds as patients watch the video. It collects over 100,000 data points. The device then uses AI to assess whether there’s any disruptions from the normal way the eyes move.
Cranial nerves are responsible for transmitting information between the brain and the body. Many are involved in eye movement. Pressure caused by a concussion can affect how these nerves work. So tracking how the eyes move can indicate if there’s anything wrong with the cranial nerves and where the problem lies.
If someone is healthy, their eyes should be able to focus on an object, follow movement and both eyes should be coordinated with each other. The EyeBox can detect abnormalities. For example, if a patient’s eyes are coordinated but they are not moving as they should, that indicates issues in the central brain stem, whilst only one eye moving abnormally suggests that a particular nerve section is affected.
Uzma Samadani with the EyeBOX device
Courtesy Oculogica
“The EyeBOX is a monitor for cranial nerves,” says Samadani. “Essentially it’s a form of digital neurological exam. “Several other eye-tracking techniques already exist, but they rely on subjective self-reported symptoms. Many also require a baseline, a measure of how patients reacted when they were healthy, which often isn’t available.
VOMS (Vestibular Ocular Motor Screen) is one of the most accurate diagnostic tests used in clinics in combination with other tests, but it is subjective. It involves a therapist getting patients to move their head or eyes as they focus or follow a particular object. Patients then report their symptoms.
The King-Devick test measures how fast patients can read numbers and compares it to a baseline. Since it is mainly used for athletes, the initial test is completed before the season starts. But participants can manipulate it. It also cannot be used in emergency rooms because the majority of patients wouldn’t have prior baseline tests.
Unlike these tests, EyeBOX doesn’t use a baseline and is objective because it doesn’t rely on patients’ answers. “It shows great promise,” says Thomas Wilcockson, a senior lecturer of psychology in Loughborough University, who is an expert in using eye tracking techniques in neurological disorders. “Baseline testing of eye movements is not always possible. Alternative measures of concussion currently in development, including work with VR headsets, seem to currently require it. Therefore the EyeBOX may have an advantage.”
A technology that’s still evolving
In their last clinical trial, Oculogica used the EyeBOX to test 46 patients who had concussion and 236 patients who did not. The sensitivity of the EyeBOX, or the probability of it correctly identifying the patient’s concussion, was 80.4 percent. Meanwhile, the test accurately ruled out a concussion in 66.1 percent of cases. This is known as its specificity score.
While the team is working on improving the numbers, experts who treat concussion patients find the device promising. “I strongly support their use of eye tracking for diagnostic decision making,” says Douglas Powell. “But for diagnostic tests, we would prefer at least one of the sensitivity or specificity values to be greater than 90 percent. Powell compares EyeBOX with the Buffalo Concussion Treadmill Test, which has sensitivity and specificity values of 73 and 78 percent, respectively. The VOMS also has shown greater accuracy than the EyeBOX, at least for now. Still, EyeBOX is competitive with the best diagnostic testing available for concussion and Powell hopes that its detection prowess will improve. “I anticipate that the algorithms being used by Oculogica will be under continuous revision and expect the results will improve within the next several years.”
“The color of your skin can have a huge impact in how quickly you are triaged and managed for brain injury. People of color have significantly worse outcomes after traumatic brain injury than people who are white.” -- Uzma Samadani, founder of Oculogica
Powell thinks the EyeBOX could be an important complement to other concussion assessments.
“The Oculogica product is a viable diagnostic tool that supports clinical decision making. However, concussion is an injury that can present with a wide array of symptoms, and the use of technology such as the Oculogica should always be a supplement to patient interaction.”
Ioannis Mavroudis, a consultant neurologist at Leeds Teaching Hospital, agrees that the EyeBOX has promise, but cautions that concussions are too complex to rely on the device alone. For example, not all concussions affect how eyes move. “I believe that it can definitely help, however not all concussions show changes in eye movements. I believe that if this could be combined with a cognitive assessment the results would be impressive.”
The Oculogica team submitted their clinical data for FDA approval and received it in 2018. Now, they’re working to bring the test to the commercial market and using the device clinically to help diagnose concussions for clients. They also want to look at other areas of brain health in the next few years. Samadani believes that the EyeBOX could possibly be used to detect diseases like multiple sclerosis or other neurological conditions. “It’s a completely new way of figuring out what someone’s neurological exam is and we’re only beginning to realize the potential,” says Samadani.
One of Samadani’s biggest aspirations is to help reduce inequalities in healthcare because of skin color and other factors like money or language barriers. From that perspective, the EyeBOX’s greatest potential could be in emergency rooms. It can help diagnose concussions in addition to the questionnaires, assessments and symptom checklists, currently used in the emergency departments. Unlike these more subjective tests, EyeBOX can produce an objective analysis of brain injury through AI when patients are admitted and assessed, unrelated to their socioeconomic status, education, or language abilities. Studies suggest that there are racial disparities in how patients with brain injuries are treated, such as how quickly they're assessed and get a treatment plan.
“The color of your skin can have a huge impact in how quickly you are triaged and managed for brain injury,” says Samadani. “As a result of that, people of color have significantly worse outcomes after traumatic brain injury than people who are white. The EyeBOX has the potential to reduce inequalities,” she explains.
“If you had a digital neurological tool that you could screen and triage patients on admission to the emergency department you would potentially be able to make sure that everybody got the same standard of care,” says Samadani. “My goal is to change the way brain injury is diagnosed and defined.”