Will Blockchain Technology Usher in a Healthcare Data Revolution?
Digital blockchain concept.
The hacker collective known as the Dark Overlord first surfaced in June 2016, when it advertised more than 600,000 patient files from three U.S. healthcare organizations for sale on the dark web. The group, which also attempted to extort ransom from its victims, soon offered another 9 million records pilfered from health insurance companies and provider networks across the country.
Since 2009, federal regulators have counted nearly 5,000 major data breaches in the United States alone, affecting some 260 million individuals.
Last October, apparently seeking publicity as well as cash, the hackers stole a trove of potentially scandalous data from a celebrity plastic surgery clinic in London—including photos of in-progress genitalia- and breast-enhancement surgeries. "We have TBs [terabytes] of this shit. Databases, names, everything," a gang representative told a reporter. "There are some royal families in here."
Bandits like these are prowling healthcare's digital highways in growing numbers. Since 2009, federal regulators have counted nearly 5,000 major data breaches in the United States alone, affecting some 260 million individuals. Although hacker incidents represent less than 20 percent of the total breaches, they account for almost 80 percent of the affected patients. Such attacks expose patients to potential blackmail or identity theft, enable criminals to commit medical fraud or file false tax returns, and may even allow hostile state actors to sabotage electric grids or other infrastructure by e-mailing employees malware disguised as medical notices. According to the consulting agency Accenture, data theft will cost the healthcare industry $305 billion between 2015 and 2019, with annual totals doubling from $40 billion to $80 billion.
Blockchain could put patients in control of their own data, empowering them to access, share, and even sell their medical information as they see fit.
One possible solution to this crisis involves radically retooling the way healthcare data is stored and shared—by using blockchain, the still-emerging information technology that underlies cryptocurrencies such as Bitcoin. And blockchain-enabled IT systems, boosters say, could do much more than prevent the theft of medical data. Such networks could revolutionize healthcare delivery on many levels, creating efficiencies that would reduce medical errors, improve coordination between providers, drive down costs, and give researchers unprecedented insights into patterns of disease. Perhaps most transformative, blockchain could put patients in control of their own data, empowering them to access, share, and even sell their medical information as they see fit. Widespread adoption could result in "a new kind of healthcare economy, in which data and services are quantifiable and exchangeable, with strong guarantees around both the security and privacy of sensitive information," wrote W. Brian Smith, chief scientist of healthcare-blockchain startup PokitDok, in a recent white paper.
Around the world, entrepreneurs, corporations, and government agencies are hopping aboard the blockchain train. A survey by the IBM Institute for Business Value, released in late 2016, found that 16 percent of healthcare executives in 16 countries planned to begin implementing some form of the technology in the coming year; 90 percent planned to launch a pilot program in the next two years. In 2017, Estonia became the first country to switch its medical-records system to a blockchain-based framework. Great Britain and Dubai are exploring a similar move. Yet in countries with more fragmented health systems, most notably the U.S., the challenges remain formidable. Some of the most advanced healthcare applications envisioned for blockchain, moreover, raise technological and ethical questions whose answers may not arrive anytime soon.
By creating a detailed, comprehensive, and immutable timeline of medical transactions, blockchain-based recordkeeping could help providers gauge a patient's long-term health patterns in a way that's never before been possible.
What Exactly Is Blockchain, Anyway?
To understand the buzz around blockchain, it's necessary to grasp (at least loosely) how the technology works. Ordinary digital recordkeeping systems rely on a central administrator that acts as gatekeeper to a treasury of data; if you can sneak past the guard, you can often gain access to the entire hoard, and your intrusion may go undetected indefinitely. Blockchain, by contrast, employs a network of synchronized, replicated databases. Information is scattered among these nodes, rather than on a single server, and is exchanged through encrypted, peer-to-peer pathways. Each transaction is visible to every computer on the network, and must be approved by a majority in order to be successfully completed. Each batch of transactions, or "block," is date- and time-stamped, marked with the user's identity, and given a cryptographic code, which is posted to every node. These blocks form a "chain," preserved in an electronic ledger, that can be read by all users but can't be edited. Any unauthorized access, or attempt at tampering, can be quickly neutralized by these overlapping safeguards. Even if a hacker managed to break into the system, penetrating deeply would be extraordinarily difficult.
Because blockchain technology shares transaction records throughout a network, it could eliminate communication bottlenecks between different components of the healthcare system (primary care physicians, specialists, nurses, and so on). And because blockchain-based systems are designed to incorporate programs known as "smart contracts," which automate functions previously requiring human intervention, they could reduce dangerous slipups as well as tedious and costly paperwork. For example, when a patient gets a checkup, sees a specialist, and fills a prescription, all these actions could be automatically recorded on his or her electronic health record (EHR), checked for errors, submitted for billing, and entered on insurance claims—which could be adjudicated and reimbursed automatically as well. "Blockchain has the potential to remove a lot of intermediaries from existing workflows, whether digital or nondigital," says Kamaljit Behera, an industry analyst for the consulting firm Frost & Sullivan.
The possible upsides don't end there. By creating a detailed, comprehensive, and immutable timeline of medical transactions, blockchain-based recordkeeping could help providers gauge a patient's long-term health patterns in a way that's never before been possible. In addition to data entered by their caregivers, individuals could use app-based technologies or wearables to transmit other information to their records, such as diet, exercise, and sleep patterns, adding new depth to their medical portraits.
Many experts expect healthcare blockchain to take root more slowly in the U.S. than in nations with government-run national health services.
Smart contracts could also allow patients to specify who has access to their data. "If you get an MRI and want your orthopedist to see it, you can add him to your network instead of carrying a CD into his office," explains Andrew Lippman, associate director of the MIT Media Lab, who helped create a prototype healthcare blockchain system called MedRec that's currently being tested at Beth Israel Deaconess Hospital in Boston. "Or you might make a smart contract to allow your son or daughter to access your healthcare records if something happens to you." Another option: permitting researchers to analyze your data for scientific purposes, whether anonymously or with your name attached.
The Recent History, and Looking Ahead
Over the past two years, a crowd of startups has begun vying for a piece of the emerging healthcare blockchain market. Some, like PokitDok and Atlanta-based Patientory, plan to mint proprietary cryptocurrencies, which investors can buy in lieu of stock, medical providers may earn as a reward for achieving better outcomes, and patients might score for meeting wellness goals or participating in clinical trials. (Patientory's initial coin offering, or ICO, raised more than $7 million in three days.) Several fledgling healthcare-blockchain companies have found powerful corporate partners: Intel for Silicon Valley's PokitDok, Kaiser Permanente for Patientory, Philips for Los Angeles-based Gem Health. At least one established provider network, Change Healthcare, is developing blockchain-based systems of its own. Two months ago, Change launched what it calls the first "enterprise-scale" blockchain network in U.S. healthcare—a system to track insurance claim submissions and remittances.
No one, however, has set a roll-out date for a full-blown, blockchain-based EHR system in this country. "We have yet to see anything move from the pilot phase to some kind of production status," says Debbie Bucci, an IT architect in the federal government's Office of the National Coordinator for Health Information Technology. Indeed, many experts expect healthcare blockchain to take root more slowly here than in nations with government-run national health services. In America, a typical patient may have dealings with a family doctor who keeps everything on paper, an assortment of hospitals that use different EHR systems, and an insurer whose system for processing claims is separate from that of the healthcare providers. To help bridge these gaps, a consortium called the Hyperledger Healthcare Working Group (which includes many of the leading players in the field) is developing standard protocols for blockchain interoperability and other functions. Adding to the complexity is the federal Health Insurance and Portability Act (HIPAA), which governs who can access patient data and under what circumstances. "Healthcare blockchain is in a very nascent stage," says Behera. "Coming up with regulations and other guidelines, and achieving large-scale implementation, will take some time."
The ethical implications of buying and selling personal genomic data in an electronic marketplace are doubtless open to debate.
How long? Behera, like other analysts, estimates that relatively simple applications, such as revenue-cycle management systems, could become commonplace in the next five years. More ambitious efforts might reach fruition in a decade or so. But once the infrastructure for healthcare blockchain is fully established, its uses could go far beyond keeping better EHRs.
A handful of scientists and entrepreneurs are already working to develop one visionary application: managing genomic data. Last month, Harvard University geneticist George Church—one of the most influential figures in his discipline—launched a business called Nebula Genomics. It aims to set up an exchange in which individuals can use "Neptune tokens" to purchase DNA sequencing, which will be stored in the company's blockchain-based system; research groups will be able to pay clients for their data using the same cryptocurrency. Luna DNA, founded by a team of biotech veterans in San Diego, plans a similar service, as does a Moscow-based startup called the Zenome Project.
Hossein Rahnama, CEO of the mobile-tech company Flybits and director of research at the Ryerson Centre for Cloud and Context-Aware Computing in Toronto, envisions a more personalized way of sharing genomic data via blockchain. His firm is working with a U.S. insurance company to develop a service that would allow clients in their 20s and 30s to connect with people in their 70s or 80s with similar genomes. The young clients would learn how the elders' lifestyle choices had influenced their health, so that they could modify their own habits accordingly. "It's intergenerational wisdom-sharing," explains Rahnama, who is 38. "I would actually pay to be a part of that network."
The ethical implications of buying and selling personal genomic data in an electronic marketplace are doubtless open to debate. Such commerce could greatly expand the pool of subjects for research in many areas of medicine, enabling the kinds of breakthroughs that only Big Data can provide. Yet it could also lead millions to surrender the most private information of all—the secrets of their cells—to buyers with less benign intentions. The Dark Overlord, one might argue, could not hope for a more satisfying victory.
These scenarios, however, are pure conjecture. After the first web page was posted, in 1991, Lippman observes, "a whole universe developed that you couldn't have imagined on Day 1." The same, he adds, is likely true for healthcare blockchain. "Our vision is to make medical records useful for you and for society, and to give you more control over your own identity. Time will tell."
The upcoming vaccine is changing the way we look at treating one of the country’s deadliest cancers.
Last week, researchers at the University of Oxford announced that they have received funding to create a brand new way of preventing ovarian cancer: A vaccine. The vaccine, known as OvarianVax, will teach the immune system to recognize and destroy mutated cells—one of the earliest indicators of ovarian cancer.
Understanding Ovarian Cancer
Despite advancements in medical research and treatment protocols over the last few decades, ovarian cancer still poses a significant threat to women’s health. In the United States alone, more than 12,0000 women die of ovarian cancer each year, and only about half of women diagnosed with ovarian cancer survive five or more years past diagnosis. Unlike cervical cancer, there is no routine screening for ovarian cancer, so it often goes undetected until it has reached advanced stages. Additionally, the primary symptoms of ovarian cancer—frequent urination, bloating, loss of appetite, and abdominal pain—can often be mistaken for other non-cancerous conditions, delaying treatment.
An American woman has roughly a one percent chance of developing ovarian cancer throughout her lifetime. However, these odds increase significantly if she has inherited mutations in the BRCA1 or BRCA2 genes. Women who carry these mutations face a 46% lifetime risk for ovarian and breast cancers.
An Unlikely Solution
To address this escalating health concern, the organization Cancer Research UK has invested £600,000 over the next three years in research aimed at creating a vaccine, which would destroy cancerous cells before they have a chance to develop any further.
Researchers at the University of Oxford are at the forefront of this initiative. With funding from Cancer Research UK, scientists will use tissue samples from the ovaries and fallopian tubes of patients currently battling ovarian cancer. Using these samples, University of Oxford scientists will create a vaccine to recognize certain proteins on the surface of ovarian cancer cells known as tumor-associated antigens. The vaccine will then train that person’s immune system to recognize the cancer markers and destroy them.
The next step
Once developed, the vaccine will first be tested in patients with the disease, to see if their ovarian tumors will shrink or disappear. Then, the vaccine will be tested in women with the BRCA1 or BRCA2 mutations as well as women in the general population without genetic mutations, to see whether the vaccine can prevent the cancer altogether.
While the vaccine still has “a long way to go,” according to Professor Ahmed Ahmed, Director of Oxford University’s ovarian cancer cell laboratory, he is “optimistic” about the results.
“We need better strategies to prevent ovarian cancer,” said Ahmed in a press release from the University of Oxford. “Currently, women with BRCA1/2 mutations are offered surgery which prevents cancer but robs them of the chance to have children afterward.
Teaching the immune system to recognize the very early signs of cancer is a tough challenge. But we now have highly sophisticated tools which give us real insights into how the immune system recognizes ovarian cancer. OvarianVax could offer the solution.”
How sharing, hearing, and remembering positive stories can help shape our brains for the better
Across cultures and through millennia, human beings have always told stories. Whether it’s a group of boy scouts around a campfire sharing ghost stories or the paleolithic Cro-Magnons etching pictures of bison on cave walls, researchers believe that storytelling has been universal to human beings since the development of language.
But storytelling was more than just a way for our ancestors to pass the time. Researchers believe that storytelling served an important evolutionary purpose, helping humans learn empathy, share important information (such as where predators were or what berries were safe to eat), as well as strengthen social bonds. Quite literally, storytelling has made it possible for the human race to survive.
Today, neuroscientists are discovering that storytelling is just as important now as it was millions of years ago. Particularly in sharing positive stories, humans can more easily form relational bonds, develop a more flexible perspective, and actually grow new brain circuitry that helps us survive. Here’s how.
How sharing stories positively impacts the brain
When human beings share stories, it increases the levels of certain neurochemicals in the brain, neuroscientists have found. In a 2021 study published in Proceedings of the National Academy of Sciences (PNAS), Swedish researchers found that simply hearing a story could make hospitalized children feel better, compared to other hospitalized children who played a riddle game for the same amount of time. In their research, children in the intensive care unit who heard stories for just 30 minutes had higher levels of oxytocin, a hormone that promotes positive feelings and is linked to relaxation, trust, social connectedness, and overall psychological stability. Furthermore, the same children showed lower levels of cortisol, a hormone associated with stress. Afterward, the group of children who heard stories tended to describe their hospital experiences more positively, and even reported lower levels of pain.
Annie Brewster, MD, knows the positive effect of storytelling from personal experience. An assistant professor at Harvard Medical School and the author of The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss, Brewster started sharing her personal experience with chronic illness after being diagnosed with multiple sclerosis in 2001. In doing so, Brewster says it has enabled her to accept her diagnosis and integrate it into her identity. Brewster believes so much in the power of hearing and sharing stories that in 2013 she founded Health Story Collaborative, a forum for others to share their mental and physical health challenges.“I wanted to hear stories of people who had found ways to move forward in positive ways, in spite of health challenges,” Brewster said. In doing so, Brewster believes people with chronic conditions can “move closer to self-acceptance and self-love.”
While hearing and sharing positive stories has been shown to increase oxytocin and other “feel good” chemicals, simply remembering a positive story has an effect on our brains as well. Mark Hoelterhoff, PhD, a lecturer in clinical psychology at the University of Edinburgh, recalling and “savoring” a positive story, thought, or feedback “begins to create new brain circuitry—a new neural network that’s geared toward looking for the positive,” he says. Over time, other research shows, savoring positive stories or thoughts can literally change the shape of your brain, hard-wiring someone to see things in a more positive light.How stories can change your behavior
In 2009, Paul Zak, PhD, a neuroscientist and professor at Claremont Graduate University, set out to measure how storytelling can actually change human behavior for the better. In his study, Zak wanted to measure the behavioral effects of oxytocin, and did this by showing test subjects two short video clips designed to elicit an emotional response.
In the first video they showed the study participants, a father spoke to the camera about his two-year-old son, Ben, who had been diagnosed with terminal brain cancer. The father told the audience that he struggled to connect with and enjoy Ben, as Ben had only a few months left to live. In the end, the father finds the strength to stay emotionally connected to his son until he dies.
The second video clip, however, was much less emotional. In that clip, the same father and son are shown spending the day at the zoo. Ben is only suggested to have cancer (he is bald from chemotherapy and referred to as a ‘miracle’, but the cancer isn’t mentioned directly). The second story lacked the dramatic narrative arc of the first video.
Zak’s team took blood before and after the participants watched one of the two videos and found that the first story increased the viewers’ cortisol and oxytocin, suggesting that they felt distress over the boy’s diagnosis and empathy toward the boy and his father. The second narrative, however, didn’t increase oxytocin or cortisol at all.
But Zak took the experiment a step further. After the movie clips, his team gave the study participants a chance to share money with a stranger in the lab. The participants who had an increase in cortisol and oxytocin were more likely to donate money generously. The participants who had increased cortisol and oxytocin were also more likely to donate money to a charity that works with children who are ill. Zak also found that the amount of oxytocin that was released was correlated with how much money people felt comfortable giving—in other words, the more oxytocin that was released, the more generous they felt, and the more money they donated.
How storytelling strengthens our bond with others
Sharing, hearing, and remembering stories can be a powerful tool for social change–not only in the way it changes our brain and our behavior, but also because it can positively affect our relationships with other people
Emotional stimulation from telling stories, writes Zak, is the foundation for empathy, and empathy strengthens our relationships with other people. “By knowing someone’s story—where they come from, what they do, and who you might know in common—relationships with strangers are formed.”
But why are these relationships important for humanity? Because human beings can use storytelling to build empathy and form relationships, it enables them to “engage in the kinds of large-scale cooperation that builds massive bridges and sends humans into space,” says Zak.
Storytelling, Zak found, and the oxytocin release that follows, also makes people more sensitive to social cues. This sensitivity not only motivates us to form relationships, but also to engage with other people and offer help, particularly if the other person seems to need help.
But as Zak found in his experiments, the type of storytelling matters when it comes to affecting relationships. Where Zak found that storytelling with a dramatic arc helps release oxytocin and cortisol, enabling people to feel more empathic and generous, other researchers have found that sharing happy stories allows for greater closeness between individuals and speakers. A group of Chinese researchers found that, compared to emotionally-neutral stories, happy stories were more “emotionally contagious.” Test subjects who heard happy stories had greater activation in certain areas of their brains, experienced more significant, positive changes in their mood, and felt a greater sense of closeness between themselves and the speaker.
“This finding suggests that when individuals are happy, they become less self-focused and then feel more intimate with others,” the authors of the study wrote. “Therefore, sharing happiness could strengthen interpersonal bonding.” The researchers went on to say that this could lead to developing better social networks, receiving more social support, and leading more successful social lives.
Since the start of the COVID pandemic, social isolation, loneliness, and resulting mental health issues have only gotten worse. In light of this, it’s safe to say that hearing, sharing, and remembering stories isn’t just something we can do for entertainment. Storytelling has always been central to the human experience, and now more than ever it’s become something crucial for our survival.
Want to know how you can reap the benefits of hearing happy stories? Keep an eye out for Upworthy’s first book, GOOD PEOPLE: Stories from the Best of Humanity, published by National Geographic/Disney, available on September 3, 2024. GOOD PEOPLE is a much-needed trove of life-affirming stories told straight from the heart. Handpicked from Upworthy’s community, these 101 stories speak to the breadth, depth, and beauty of the human experience, reminding us we have a lot more in common than we realize.