Last September, Bloomberg hosted a seminar titled “The Value of Data: How Emerging Technologies are Redefining our Future,” on how blockchain and artificial intelligence have signif icantly improved the auto, agriculture, and healthcare industries, in turn benefitting their customers. The health portion of the event highlighted Patientory Inc., which aggregates patients’ health data to help users lead healthier lifestyles. Putting aside the debate on the cost and coverage of health insurance, which has become a major part of American discourse since the passage of President Barack Obama’s Affordable Care Act, health data has become a sticking point for patients looking to access it and hospital administrators who are reti- cent to provide it.
The history
In 1951, the story of Henrietta Lacks, the African-American woman whose cervical cancer cells were used for scientific research without her or her fam- ily’s consent, gained prominence because Lacks’ genes created the f irst immortal human cell line. Rebecca Skloot’s 2010 book, The Immortal Life of Henrietta Lacks, revived the contro- versy. After public outcry over scien- tists’ “by-any-means-necessary” meth- ods of using genetic data to further sci- ence, National Institutes of Health (NIH) Director Francis Collins, M.D., and NIH Deputy Director for Science, Outreach and Policy Kathy Hudson, M.D., devised a plan to protect family genetic information while allowing for the advancement of scientific experiments that cure diseases.
The story shed light on the wider issue of patient privacy and access to health data, both of which the Lacks family were denied. They’re not alone. Digital age or not, medical records can be tricky in an industry that’s expected to value trillions of dollars by 2025.
Legislation
Judith Graham, a writer for Kaiser Health News, reports in a 2018 article that federal law guarantees people the right to obtain a copy of their medical records. However, researchers at Yale University recently revealed evidence of barriers to exercising this right. “Late last year, researchers collected forms that patients use to request records from each hospital. Then, researchers called the hos- pitals and asked how to get records, the cost of the process, how long it would take, the format in which information would be sent, and whether the entire record would be available,” Graham writes. “Researchers didn’t disclose that they were conducting an academic study; instead, they posed as a relative asking questions on behalf of a grandmother who needed her records before seeking a second opinion. Hospitals’ answers were inconsistent: In many cases, the information on forms didn’t match what researchers were told on the phone. Sometimes their answers violated federal or state legal requirements.”
Although Title 1 of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) requires medical providers to give individuals access to their protected health information, (PHI), Harlan Krumholz, M.D., co- author of the study and professor of Medicine, Epidemiology, and Public Health at the Yale University School of Medicine, admits that the system doesn’t give patients reliable or consistent responses. Moreover, he notes, “some people who work in medical records departments appear to be ignorant of the law and the rights that patients have.”
Some medical professionals do get it. Italo Brown, M.D., a resident in the Department of Emergency Medicine at Jacobi Medical Center, told The Network Journal that doctors like him are excited when patients keep up with their health issues. They understand that access to those records is key, “as long as it can be done in a secure manner so patient privacy isn’t compromised,” he says.
Technology
New technologies are performing nothing short of miracles. Artificial intelligence helps farmers grow more food and the deaf to see sound; blockchain guards some of the many digital health startups that have sprouted over the past five years in the U.S. Take Patientory Inc., co-founded by Chrissa McFarlane, a medical company employee-turned- consultant to healthcare technology companies. Patientory’s product is powered by blockchain technology, which secures data in addition to granting access. It also acts as an enterprise solution for healthcare organizations to better streamline clinical and financial workflow, essentially benefiting patients and hospitals alike.
“Eight years ago, we saw Google and Microsoft try to create one-stop shops for health information, and they failed,” McFarlane told TNJ. “In the healthcare industry, we have all these participants, yet we have patients who are getting more ill, and don’t even have easy access to their patient information, which is housed by their clinician or at a hospital.”
Her platform integrates with hospital systems, allowing the Patientory team to distribute a hospital’s data through a storage system. “Health care has become huge in the U.S., and through our platform, we’re able to harness powerful data, whether criteria or improvements in top management, to provide real-time analytics of a particular healthcare organization,” she explains.
How it works
Though still in the early beta stage, the Patientory app has been gaining traction because, users say, they can integrate it with their Apple Health Watch or their Fitbit. “They are excited to see what more data they can use and how our alerts help to them stay on track with their health regimens and goals— something consumers definitely want. We do the heavy lifting, so they can focus on their goals,” McFarlane states.
“Taking better care of one’s health lies in one’s actual data and the ability to get a handle on that data, be it counting calories or taking medication,” she notes. “There’s an impact on your overall health when you’re knowledgeable about it.”
For Brown, a platform such as Patientory could be an asset to the medical community, which tends to lag others in tech advancements. “Some hospitals do have portals and platforms for patients to access their lab results and imaging tests. What makes it difficult is the question of security,” he remarks. “People don’t want their medical information float- ing around, and the idea of cloud software makes some people uncomfortable. Truth is, that’s the direction that health care is shifting. Data has to be available across multiple hospitals; that’s the true benefit.” If, for example, you get sick and end up at a hospital other than your primary home hospital, “this type of platform allows the provider at the other hospital to have the same records about your health that your primary doctors have. It adds to a level of continuity,” he notes.
A patient once showed Brown an app on her phone that displayed her medical details. “It becomes a hassle to call another hospital to verify something, so that made my life easier,” Brown affirms. “I was then able to make an informed decision about treatment that, ultimately, saved the patient from an unnecessary and costly procedure.”
Since blockchain is a nascent technology, Patientory’s app still faces challenges. “Two years ago, no one was talking about this,” McFarlane says. “Our biggest challenge is definitely the education piece. We’re starting to see more organizations come together and compile the technology so that they all gain an understanding of the value in it. At this point, adoption is where we’re really trying to get to.”
Brown asserts that the use of technology that gives a patient true access to their records eliminates some of the middlemen in the medical space. “I don’t know if that’s something the medical community is one hundred percent ready for,” he muses.
McFarlane is betting that blockchain technology can assist in a patient’s well-being through the Patientory app. “One can only hope,” she states.
