More and more individuals are using digital data to make informed decisions about their health. Whether it be health information collected by wearable devices or lab test results in a patient portal, individuals can now access, share, and use electronic health data to manage their health needs. The COVID-19 pandemic has underscored the importance of individuals taking a proactive approach to accessing to their electronic health information so that they can be better prepared in advance of an emergency. And as ONC’s Elise Sweeney Anthony recently shared, empowering patients with their data puts them in control as active participants in their care.

More than a decade of federal policy has sought to ensure patients have electronic access to their health information. The ONC 21^st Century Cures Act (Cures Act) Final Rule, published in 2020, built upon previous federal initiatives to modernize patient access to their health information by promoting the adoption of secure, standards-based application programming interfaces (APIs). APIs make it possible for patients to use smartphone, tablet, and desktop apps to access their health information from certified electronic health record (EHR) systems.

ONC recently published two data briefs that explore the current state of patient electronic access to health information. These briefs – Hospital Capabilities to Enable Patient Electronic Access to Health Information, 2019 and Individuals’ Access and Use of Patient Portals and Smartphone Health Apps, 2020 – provide new insights into the adoption of secure, standards-based APIs by hospitals, and their subsequent use by patients via their smartphone health apps.

In 2020, new survey data found that among individuals that used  a patient portal offered by their health care provider or insurer in the past year about 4 in 10 accessed their health information using a mobile health app. Individuals’ usage of apps corresponds with a rapid increase in health care providers’ enabling patients’ access to their health records using apps and an increased availability of apps to use.  In 2019, about 7 in 10 non-federal acute care hospitals enabled this capability, a two-fold increase since 2017. New ONC research also shows that more apps are integrating with certified EHRs. We expect this upward trend to continue as more certified health IT developers begin to meet requirements established under the Cures Act Final Rule. The Cures Act Final Rule established consistent standards and technical requirements for third-party apps to connect to certified EHRs instead of such app developers having to deal with multiple different, proprietary interfaces. As the number of apps that connect with EHRs increases and the functionality of these apps becomes more robust, we believe this will increase demand and use by patients.

Creating a Proactive Approach

Previous ONC research found that one of the most common reasons reported by patients for not accessing their patient portal was because they did not feel like they had a medical need to do so. While healthy individuals may think they currently do not have a medical need to electronically access their health records, it is impossible to predict when a medical emergency – and the need for these records – may arise; the convenience to do so is a substantial benefit.

ONC and the health IT community are working together to make patient health information available in the most convenient and easy-to-use format. Educating patients about the benefits of having electronic access to their health records and the methods their health care providers offer to access this information could help increase the use of patient portals and health apps. Health care providers having conversations with their patients and encouraging them to use these tools has been shown to increase uptake. When the API provisions in the Cures Act Final Rule go into effect on December 31, 2022, patients should be more readily able to access and manage their health information.

Equally as important as patients’ ability to electronically access and manage their health information is their understanding of keeping their information secure, just like they do when sharing other types of sensitive information – such as banking – with other apps.  While HIPAA provides for the privacy of health information, as well as the right of access, the decision to access one’s electronic health information and how to use and share that information is left to the individual.  ONC continues to take steps to protect health information, including a number of security-related capabilities in the 2015 Edition Standards and Certification criteria, and we encourage the development of digital health products that demonstrably protect patient health information.

ONC has published a number of resources for patients and their providers to learn about the benefits of patients having access to their health records and offer tips for how to request access.