Policy Solutions to Fulfill the Promise of the Health Information Transformation

The healthcare system is transforming to a patient-centered model and opening up avenues of innovation. The availability and exchange of patient health information is integral to that transformation. The government is driving the transformation in part by opening up health data to providers and requiring providers make complete electronic health records (EHRs) available to patients. New kinds of health information are being created in the private sector as companies develop different forms of personal health record (PHR) management platforms, including smartphone applications and wearable devices that patients are using to track food consumption, exercise, blood pressure, and a variety of other health metrics.The government’s goal is to "empower individuals and families to invest in and manage their health" by giving them access "to the applications and services that can safely and accurately analyze" their health information. To that end, the U.S. Department of Health and Human Services (HHS) has released rules that authorize providers and patients to designate trusted intermediaries who can access EHRs through open application program interfaces (APIs). This is happening at the same time the entire healthcare system is driving towards value-based care models. Under a value-based system, providers and doctors increase their engagement with patients, reminding them when to take medication or schedule appointments, and predicting when a patient may need medical treatment or intervention in advance.Trusted intermediaries may facilitate value-based care with user-friendly applications that allow providers and doctors to better engage with patients. Applications may also be the key to a patient-centered model because they can enable patients - and their families and caregivers - to take charge of their own care. In principle, patients could designate trusted intermediaries as digital health advisors. In this role, intermediaries could aggregate and analyze an individual’s health information from multiple sources (e.g., various providers and patient-generated health information from PHR platforms) and then engage with patients through their applications to assist in monitoring their health, suggesting potential care plans, or providing other guidance for the patients to discuss with their doctors and providers.Empowering patients to meaningfully use their health information is a promising development. At the same time, it raises a series of policy challenges. To discuss the changing healthcare information landscape and appropriate policy responses to these opportunities and challenges, the Silicon Flatirons Center convened a group of experts from government, academia, and the private sector on June 17, 2015 for a roundtable discussion under the "Chatham House Rule."This report, which captures, is informed by, and follows the roundtable discussion, proceeds in three parts. Part I of this report captures the challenges to the healthcare transformation identified by the roundtable participants. In so doing, it highlights how patient and provider culture and behavior creates barriers to information access and describes the privacy and security concerns associated with allowing intermediaries to access patient information. Part II offers policy solutions raised by the roundtable that HHS should consider to address the challenges identified. These solutions include ensuring patient-designated intermediaries are not unreasonably blocked from accessing EHRs, incentivized creation and adoption of a Code of Conduct and Model Privacy Notice, and a fiduciary obligation for digital health advisors. Part III describes the benefits of the proposed policy solutions and how they will facilitate the emerging healthcare transformation.