It’s been more than two decades since the passing of the landmark Health Insurance Portability and Accountability Act (HIPAA), reform-minded legislation that established substantial patient protections. Its chief objectives were enabling consumers to maintain health coverage between jobs, while also ensuring the privacy of personal health information. A crucial element of the privacy component was a mandate to create uniform standards for health data and to give patients easy digital access to their own records. While substantial progress has been made, healthcare has yet to achieve the kind of open, transparent, and interconnected access to information that’s common in other industries and that would substantially improve the cost and efficiency of the system.
Yet a confluence of several factors over the past few years, including skyrocketing costs, accelerating technology developments, and regulation supporting patient data availability, are prompting systemic change from which patients should soon see the benefits.
A System Out of Focus
The notion that patients aren’t the center of an entire healthcare system is counterintuitive. But that’s how the industry has organically evolved over the decades, says Kris Joshi, Ph.D., executive vice president of Network Solutions for Change Healthcare.
“Healthcare has tended to focus on solving problems from a provider’s perspective, or from a payer’s perspective, or from the government’s perspective,” Joshi says. “Much of it is based on decisions made a long time ago: Employers started to pay for healthcare and then insurance companies stepped in, mainly treating the employer as their customer, and paying most bills without even the patients’ knowledge.” The result of this B-to-B-to-C model is that patients can find themselves stuck on the sidelines of their own care.
For most Americans, that means not having access to a comprehensive health record detailing test results, inoculations, diagnostics, treatments, and procedures. It also may mean not being able to readily switch medical providers without starting from scratch every time, or requesting a file from an existing provider who may only offer a paper record that’s dozens or even hundreds of pages long. Dr. Gregory Moore, vice president of Healthcare for Google Cloud, says that for many U.S. patients, the digital age has seemingly not yet arrived. “I was amazed to find out the extent of healthcare transactions today that still occur using a piece of paper—and usually via fax,” he says.
Aneesh Chopra, president of CareJourney and former chief technology officer of the United States, says that compounding the problem has been a widespread lack of understanding by healthcare providers of their duty to supply this information to their patients.
“This notion that you have a right to access your own information is so unknown that the national society of medical records professionals—people who do this work every single day—doesn’t even have a single form you could use to invoke your rights,” he says. Chopra reports that progress is being made, though, with the American Health Information Management Association (AHIMA) recently putting out a draft form, which is currently being piloted by some organizations.
Plentiful Data, Stuck in Silos
Though paper transactions have been unexpectedly tenacious, today’s healthcare system is actually deluged with data from a vast array of sources. The problem is putting all that data to work and realizing its potential as actionable information. “The industry has spent the last decade doing this incredible work going from a paper workflow to digitizing healthcare data and we have amazing amounts, but it’s still mostly dark; it’s not accessible,” Moore says. Lacking common file and format standards, health—but also financial—data from diagnostics and lab tests, medical images, scanned documents, genomic databases, ICUs, and more, remain frustratingly siloed.
This seeming digital dead-end has a dual impact on cost and quality. On a clinical level, potential opportunities to improve a patient’s outcome may be squandered when useful streams of data can’t be aggregated. Financially, patients are at a disadvantage when they are unable to compare pricing between providers, or among treatment options. The calculus isn’t complicated: With access to meaningful information, patients are in a better position to make better decisions for their own care. “The next work for us to do is to actually connect all that data and make it interoperable,” says Moore.
Rethinking the Model
Though this data gridlock remains a hurdle, substantial progress has been made toward putting patients in control of their own health information. Chopra explains that change occurring in three major areas—regulation, the business model, and interoperability and portability of information—is driving this progress.
On the regulatory level, the 21st Century Cures Act mandates that doctors and hospitals make application programming interfaces (APIs) available. This will allow developers to create software that connects to data like health records that now may be walled off. Earlier, the Affordable Care Act (ACA) encouraged an industrywide transition away from fee-for-service to a value-based care model, which gives providers an incentive to get the best possible patient outcome for the least possible spend.
This transition, along with increasing costs and greater consumer engagement due to high-deductible health plans, is transforming the business model and has resulted in a crop of accountable care organizations around the country, which act to align the incentives between patients and providers.
“They’re saddling up with patients to say, ‘I’ll be your aggregator, your assister, your navigator—I’ll take possession of the information you allow me to have and provide you with alerts, guidance, and reminders. And I’ll educate and incentivize your physicians to behave in a better way so that you do, in fact, get better outcomes at hopefully lower cost,’” Chopra explains.
From a technology perspective, the focus on opening up data, standardizing it and allowing developers to create useful software products has spurred large-scale interest from some of the biggest names in technology. Public-private partnerships and industry-driven initiatives, such as the CommonWell Health Alliance and the Argonaut Project, both of which are aiming for interoperability and availability of data, have made significant strides to this end. Chopra says a wave of technological innovation a decade in the making is finally coming to fruition.
“These electronic medical records companies have come together and have established common standards and common consent models,” says Joshi. “And I’m happy to say that CommonWell Health Alliance, for example, is now nearing 35 million patients who have their records accessible through the network. This is a really positive step for the industry, where competing players are now collaborating to make their data interoperable.”
A Data-Driven Roadmap
As with the retail industry, where successful brands are those that embrace and cater to their customers’ needs, the healthcare industry must engage patients rather than work around them.
“Patients will have better tools for taking care of their chronic conditions, whether it’s diabetes management or treatment after an acute episode so they don’t end up 30 days later in an emergency room or readmitted,” Joshi says. “On the financial side, having transparency and the ability to know [costs] up front will help patients not only make the right choices, but also make the healthcare system function more as an effective market.”
By enabling the accessibility of personal medical and financial data, patients will be empowered in their own care, while providers will be able to optimally align care and services to efficiently, productively and profitably serve their patients. “In the not-too-distant future, patients will be able to push a few clicks on their tablet or their phone and assemble their health records in one location, to share it with whatever app they trust,” Chopra says. “When you combine this liberation of data, the ability for consumers to aggregate it, and these new models that incentivize providers to ask consumers to share that with them, you’re starting to see the roadmap for how we’re going to make the system better for everyone.”
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