Conditions such as Hashimoto’s disease often require ongoing treatment and lifestyle modifications. But apps can empower patients to improve their health.
The hardest part about having a chronic illness is its key characteristic: it’s lifelong. By definition, these illnesses are incurable. Daily, patients attempt to sleuth the cause of flares, determine what might bring relief, and hurdle obstacles to wellness, such as puzzling and debilitating symptoms, a lack of credible information, confusing medical regimens, and difficulty securing doctor appointments.
And while patients often feel isolated, they’re not alone. The Centers for Disease Control and Prevention estimates that six in 10 adults in the United States suffer from a chronic illness, while four in 10 have two or more. These illnesses account for $3.8 trillion in annual health care costs, yet the health care system isn’t equipped to meet patients’ needs.
Here’s the good news: Mobile apps are bridging a broad care gap, providing evidence-based information and tools for logging disease-related data to trace trends and patterns that can inform management strategies. According to a 2017 report by the IQVIA Institute, there were 318,500 mobile health apps that year—a number that was growing by 200 each day. Of these, 40 percent are dedicated to the management of a range of illnesses, most commonly heart disease, diabetes, musculoskeletal conditions, and mental health issues such as anxiety, depression, autism, ADHD, and Alzheimer’s. And studies suggest they work, alleviating the burden on the health care system while boosting patients’ ability to live better with illness.
According to Yossi Bahagon, cofounder and active chairman of Sweetch, a digital therapeutics solution company, “Effective therapies require frequent, individualized interventions that extend beyond the hospital and clinic to reach patients in their day-to-day lives.” Improving clinical outcomes, he says, requires overcoming the “last-mile problem” involving patient behavior.
“Mobile apps that combine advanced data science with robust behavioral science models and user experience can drive the adoption of recommended health promotion and chronic disease management behaviors in a highly personalized, cost-efficient, and scalable way that can change the trajectory of the chronic disease epidemic.”
A Complex Autoimmune Disease
While mobile apps help individuals with virtually all chronic illnesses, they may be especially useful for people with poorly understood conditions such as Hashimoto’s, a progressive, lifelong autoimmune disease and the leading cause of hypothyroidism—underactive thyroid—which affects 5 to 10 percent of the adult population. It most commonly affects women, people with a family history of the condition, and those with other autoimmune disorders such as celiac disease or lupus, and the risk increases with age. Here, the immune system produces antibodies that damage the thyroid and inhibit its production of hormones, leading to a vast array of symptoms, from fatigue to brain fog.
Because these complaints aren’t specific only to Hashimoto’s, and since routine blood tests typically don’t reveal telltale antibody levels, individuals may go undiagnosed and untreated for years, the consequences of which can be severe, including heart disease, poor mental health, fertility and pregnancy problems, and obesity and its complications.
Treatments target the thyroid. But according to Pankaj Sharda, an endocrinologist specializing in thyroid disease at Philadelphia’s Fox Chase Cancer Center, “Hypothyroidism affects everything from head to toe, not just the thyroid.” There may be other components that go unaddressed because they’re not understood. That’s why, he adds, close to a quarter of patients don’t improve with medication.
According to Katie Wilkinson, head of community at Paloma Health, an online specialty clinic focused on Hashimoto’s and hypothyroidism, key issues for patients are access to care and care quality. “The average wait time for an appointment with a thyroid doctor is 37 days,” she says. “Appointments are often rushed, averaging seven minutes, and patients often report feeling dismissed or unheard by their doctors.” In between doctor visits, they, like those with other chronic illnesses, are left to contend with fluctuating symptoms, exhaustion, and even depression.
How Apps Help
Vedrana Högqvist Tabor, a biomedical researcher with a background in digital health, faced these challenges as a Hashimoto’s patient. Tired of the one-size-fits-all approach, she wanted a solution “that would improve patients’ day-to-day care, reduce nonessential doctor visits, and relieve frustration with current treatment options.” She couldn’t find one, so she created her own, the BOOST Thyroid app (available for iPhone, and coming soon to Android.) Tabor is CEO and cofounder of VLM Health, a Berlin-based health tech startup. She and her team built an app that lets users track symptoms on an intensity scale, log lab tests and medication adherence, access evidence-based information on all aspects of Hashimoto’s and hypothyroidism, and provide their physicians with an overview of the data they input. A joint study undertaken with Oxford University indicated that approximately 96 percent of users surveyed found the app helpful, reporting fewer doctor visits, less frustration and anxiety, and fewer and less intense symptoms.
Like Tabor, Eva Galant, founder and CEO of Hashiona, was inspired by personal experience to develop an app for Hashimoto’s sufferers. Working in a high-stress corporate culture took so great a toll on her that she resigned to focus on self-care. When she changed her lifestyle to emphasize diet and stress reduction, her hypothyroid symptoms improved. Aware that most people can’t quit their jobs to prioritize their health, she developed a streamlined solution, the Hashiona app (available for iPhone and Android.)
With Hashimoto’s, “well-being depends on several factors, including proper treatment, supplementation, diet, physical activity, stress reduction, sleep hygiene, and taking care of other organs,” she says. “Making changes in all these areas without a plan may be too difficult for anyone who’s taking the first steps on the road to wellness.” The app aims to lead users to remission with a science-based, 20-week, step-by-step approach that includes modules on thyroid function, stress management, exercise, and diet, and access to teleconsultations with specialists. As with BOOST Thyroid, tracking disease factors helps users see trends and patterns and lets them rely on that data, rather than their memory, when communicating with physicians.
Another helpful tool is the Paloma Thyroid Hormone Health app (available for iPhone and Android,) created in-house by registered dietitians and health coaches from Paloma Health. According to Wilkinson, “Research shows that getting good thyroid care is extremely hard, and that diet and lifestyle interventions are not typically part of the current standard of care.” The goal was to provide “a full-stack approach that covers all their needs related to hypothyroidism.” The app provides a framework for tracking data, implementing lifestyle changes, and building thyroid-health habits through the use of more than 75 self-paced learning modules. It also features a 12-week nutrition plan based on the autoimmune protocol diet to help patients reduce inflammation and alleviate thyroid symptoms.
The Bigger Picture
Apps benefit patients by offering individualized care in place of a cookie-cutter approach, Sharda says, but they’re a boon to researchers as well. That’s why both Tabor and Galant aim to increase the role of artificial intelligence in their solutions. “This,” Galant says, “will help develop knowledge about the condition based on the thousands of anonymized data points we collect.” To this end, in the evolution of BOOST Thyroid, Tabor envisions “more individualization and actionable insights through building better algorithms, using more machine learning to help detect early disease complications.”
Tabor, who’s given TEDx and WIRED Health talks about the role “big data plays in bringing female health to parity with male health,” says anonymized data can improve outcomes, especially in diseases predominantly affecting females. In the case of Hashimoto’s, she says, it’s essential to be able to rapidly collect “big chunks of clean and diverse data” in order to turn what she calls an under-researched and underserved condition into one that’s preventively manageable.
Tabor, Galant, and other developers hope to change the future of treatment by working with academic researchers whose published analysis of the data will educate the public and inform healthcare stake holders. “By ensuring systematic logging of data we can help research to provide in-depth knowledge to other stakeholders—doctors to embrace an individualized treatment approach, insurance to understand how preventive treatment will reduce health complications, and pharmaceutical companies to understand the impact of their medication and incentivize them to create new treatment modalities,” says Tabor.
What About Privacy?
Developers assure users that privacy and security are paramount—that their apps meet or exceed all data privacy and security requirements. Hashiona, for example, Galant says, “uses the highest security measures when handling user information. All connections between the device and our servers are protected using TLS 256-bit encryption, and sensitive data are encrypted by our own keys.” Dedicated, hardware-based cryptographic key storage, she adds, “allows us to meet compliance requirements.”
Further, when data from these apps are incorporated in research, users, who are fully informed about research projects, must opt in to participate and can later opt out. No individually identifiable data is used, and no data is shared with stakeholders. The information, Tabor says, is anonymized and securely shared only with university researchers, who aggregate and analyze the data and publish their findings.
It’s All About Empowerment
Although apps can help people reduce the number of flare-ups and sick days, says Janice Johnston, chief medical officer and cofounder of Redirect Health, they’re not a substitute for routine care and physician consultation. But in the treatment of Hashimoto’s and other chronic illnesses, Sharda explains, “it’s like clapping. You need two hands. Physicians have their jobs to do, but it takes a big involvement from the patient as well.”
According to Edo Paz, a cardiologist and VP of medical at K Health, apps can bridge the care gap for people with any number of chronic illnesses while promoting empowerment. He points for example to patients with hypertension who may see their doctors two or three times a year and are on their own between visits, without reinforcement for lifestyle changes and treatment adherence—a challenge for people with most chronic conditions, especially those with diabetes and heart disease. “Patients are not just passive spectators, but active participants in chronic disease management,” he says, the true work of which “does not happen at the short visits with a doctor a few times per year, but with the actions people take on a daily basis all year long. Added up over time, these actions make a huge impact on long-term health outcomes.”
From: https://www.wired.com/story/how-apps-help-manage-chronic-illnesses/