Industry Voices—The dawn of a new day: Consumer-directed access to health data is finally here

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Providing individual access to your own health information has never been a partisan issue, write former Department of Health and Human Services Secretary Mike Leavitt and U.S. Chief Technology Officer Aneesh Chopra. (DragonImages/Getty Images)

For years, both Republican and Democratic administrations have been working to build and improve the U.S. healthcare technology infrastructure to help providers and patients.

When we each served in public office, we envisioned a day when individuals could digitally access all of their clinical and claims information via an application they trust. That application would help them make sense of their healthcare information collected over time—not just from their current primary care physician or health plan, but from any doctor, hospital or health plan with whom they’ve ever had a relationship.

That day is finally here.

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Digital health information on your chosen device

Today, the Trump administration finalized two landmark regulations from the Centers for Medicare & Medicaid Services (CMS) and the Office of the National Coordinator for Health IT (ONC), which require providers, health plans and, for the first time, government-sponsored health plans, to provide individuals with digital access to their health information through an application or device of their choice.

Providing individual access to your own health information has never been a partisan issue. It has always been a right under HIPAA, though it has often been difficult for patients and their families to access. Each administration has built on the work of the prior administration to advance the digital modernization of the healthcare system to make digital access to a person’s health information a reality.

RELATED: CMS' new interoperability rule requires major changes for payers, hospitals. Here are 6 key elements

In the Bush administration, we formed the ONC and launched a project called the American Health Information Community to begin the process of digitizing the American healthcare system. The Obama administration built on this work with a sizable investment to accelerate the adoption and use of electronic health record systems by hospitals and providers. We, as consumers over the past decade, began to access our health information via provider portals that were built to meet requirements in the meaningful use program.

The opportunity

Patients will no longer have to rely on showing up to a hospital or physician’s office to request what amounts to large stacks of paper containing their health information. Consumers will be relieved of the need to remember passwords from multiple portals in order to access and use their digital health information.

Health plan members will be able to access, in real time, their out-of-pocket costs on their phone before heading to the pharmacy, reducing the frustrating back and forth with their doctors’ offices to find a lower cost option. Finally, we have put the power in the hands of the consumer and the ability to tap into the supercomputer in their pockets to help them make better decisions.

We believe these new regulations will unlock the power of the digital health ecosystem by unleashing an unprecedented number of person-centric applications focused on helping individuals manage their chronic disease states, track their medication adherence, find high value providers, record patient consent and outcomes on surgical procedures and discover relevant clinical trials.

Data access is a matter of patient safety, better outcomes, improved costs and, often, life or death. These finalized rules will help make that dream a reality. But we still have more work to do.

Private sector call to action

The digital economy provides profound benefits but also the pitfalls—inadequate privacy protections, weak identity systems and the possible misuse of our sensitive health information—to nudge us toward harmful decisions. We must double down on industry action to mitigate these risks and build a stronger foundation for a digital health economy that works for everyone.

RELATED: Industry Voices—Your digital medical data: Liberation is (almost) here

We see the need to better respect a consumer’s informed, proactive consent for how they want their data to be shared, in some cases, exceeding today’s protections afforded under HIPAA; the opportunity to create and accept, in a secure and standardized way, a person-centric, identity-proofed, digital credential that is owned and managed by the individual without the need to remember the myriad usernames and passwords that frustrate all of us. We have been working on these challenges as part of a multiyear, public-private sector initiative called the CARIN alliance and invite others to join us in moving this work forward.  

This is a “once in a generation opportunity” as an industry, to get this right. We must build on technologies that empower the patient, and caregiver, to reduce administrative burdens on payers and providers, to ensure they have the information they need to make more informed decisions at the point of care. We must ensure the data are secured, protected and follows a consumer’s individual preferences regardless of where the data reside. Consumers can have more access without sacrificing privacy. These are not mutually exclusive concepts. Only then will we realize the benefits of a true patient-centric, value-based healthcare ecosystem.  

Let’s work together to make our healthcare system work better for providers and patients especially those with chronic conditions and the most vulnerable.

Michael O. Leavitt is a three-term governor from the state of Utah, a former Environmental Protection Agency commissioner and Secretary of Health and Human Services under President George W. Bush and founder of Leavitt Partners. Aneesh Chopra is the first U.S. chief technology officer under President Barack Obama and current president of CareJourney. Both Mr. Chopra and Governor Leavitt are co-founders of the CARIN Alliance, a public-private partnership focused on rapidly advancing the ability for consumers and their authorized caregivers to easily get, use and share their digital health information when, where and how they want to achieve their goals.

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