Policy Solutions to Fulfill the Promise of the Health Information Transformation

Abstract

The healthcare system is transforming a patient-centered model and opening up avenues of innovation. The availability and exchange of patient information is integral that transformation. The government is driving the transformation in part by opening up data providers and requiring providers make complete electronic records (EHRs) available patients. New kinds of information are being created in the private sector as companies develop different forms of personal record (PHR) management platforms, including smartphone applications and wearable devices that patients are using track food consumption, exercise, blood pressure, and a variety of other metrics.The government’s goal is empower individuals and families invest in and manage their health by giving them access to the applications and services that can safely and accurately their information. To that end, the U.S. Department of Health and Human Services (HHS) has released rules that authorize providers and patients 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 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 better engage with patients. Applications may also be the key a patient-centered model because they can enable patients - and their families and caregivers - take charge of their own care. In principle, patients could designate trusted intermediaries as digital advisors. In this role, intermediaries could aggregate and analyze an individual’s information from multiple sources (e.g., various providers and patient-generated information from PHR platforms) and then engage with patients through their applications assist in monitoring their health, suggesting potential care plans, or providing other guidance for the patients discuss with their doctors and providers.Empowering patients meaningfully use their 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 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 the healthcare transformation identified by the roundtable participants. In so doing, it highlights how patient and provider culture and behavior creates barriers information access and describes the privacy and security concerns associated with allowing intermediaries access patient information. Part II offers policy solutions raised by the roundtable that HHS should consider 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 advisors. Part III describes the benefits of the proposed policy solutions and how they will facilitate the emerging healthcare transformation.