Empowering patients to take control of their health information

Today, nearly nine out of ten doctors and virtually all hospitals have adopted electronic medical record systems (EMRs). Health care providers have more data than ever before on the health and well-being of their patients. Unfortunately, the vast majority of this data is stored in proprietary systems that make it exceedingly difficult for clinicians and patients to share health information with other providers and payers. In addition, despite extensive efforts by the federal government, patient data continues to be controlled primarily by health care providers and payers rather than individual patients.

At Humana, we fundamentally believe that every patient should be able to access, share, and control their own personal health care data. The health care industry should no longer be allowed to treat patient data as a tightly held, revenue-generating commodity. The current model has spawned a multi-billion dollar industry predicated on restricting access to patient data. We believe that the data belongs to the patient, and neither providers, EMR vendors, nor payers should profit from its sale.

The reasons for this are simple: it limits data transfer, increases patient health care costs, and adversely affects patient care. With the emergence of open application programming interfaces (APIs), we have the technology available today to empower patients to securely access and share their health information as they see fit. The only thing standing in the way is an antiquated devotion to outdated business practices.

Under the leadership of Administrator Seema Verma, CMS is proposing a new way of sharing information that leverages existing standards and technologies to empower patients to take control of their own health information. Building on the success of the Blue Button 2.0 initiative, CMS has proposed that plans be required to implement openly-published Health Level Seven (HL7) Fast Healthcare Interoperability Resources (FHIR)-based APIs that make patient claims, drug formulary, provider directory, clinical laboratory results, and other health information available to patients through third-party applications and developers. This means that a patient can access and manage their health care data via an app on their phone as easily as they manage their travel or personal finances.

This is a much-needed bold action to move the health care industry toward a consumer-mediated data exchange model rather than one controlled by health care providers and EMR vendors. In this model, the patient is easily able to access, share and control their health care data via a secure mobile app or website, similar to how they manage their finances. We strongly believe that the model envisioned by CMS will improve patient care, resulting in better health outcomes and lower costs. To that end, Humana is fully committed to implementing the open APIs proposed by CMS in 2020.

As the health care industry transitions to a consumer-mediated data exchange model, it will be critical to minimize the existing barriers to sharing health information. Under the leadership of Dr. Donald Rucker, the Office of the National Coordinator for Health Information Technology (ONC) is creating and harmonizing the standards that EHR vendors and other stakeholders must use in order to make health care data easier to share between providers and with patients. Furthermore, ONC is establishing standards to ensure that unnecessary tolls are not placed on this new road to interoperability and consumer-mediated data exchange.

As CMS and ONC begin the difficult task of finalizing their proposed regulations, we urge the agencies and the entire health care industry to adopt the following guiding principles:

Patients Should Control Their Own Health Information – All patients should have a fundamental right to access and share their personal health information as they see fit.

Rapid Implementation of Open APIs Should be a National Priority – While the development and implementation of open APIs will prove challenging, the entire health care industry must move forward without delay. To that end, we encourage CMS to adopt the proposed 2020 implementation date for open APIs, and we urge ONC to accelerate the adoption of standardized, open APIs by requiring or incentivizing EMR vendors to operationalize new open APIs before the proposed 2022 deadline.

Information Blocking Prohibitions and Enforcement Are Critical – The federal government should explicitly prohibit all business practices that directly or indirectly prevent patients from sharing their health information, including any fees for implementing open APIs and for facilitating the interoperable exchange of electronic health information. Moving forward, the inclusion of open APIs should be a core feature set of every EMR – not a revenue-generating add-on.

Patient Privacy Must Be Protected –The federal government must develop appropriate patient privacy protections for mobile app developers and other entities that are not currently subject to federal patient privacy regulations. Patients have a right to know, in plain language, how their information will be used and shared so that they can make an informed decision about whether to share their personal health information with a third-party app developer.

All regulations are iterative processes. There will be plenty of time to refine and enhance the CMS and ONC proposals in the future. However, now is the time to be on the right side of history and support implementation of these important steps toward empowering patients to take control of their health information.

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