There may be nothing more abundant in the 21st century than data. From health-focused smartphone apps to the electronic health records (EHRs) doctors and hospitals manage, data is being collected on a massive scale that could offer invaluable insights to individual and population-wide behavior and health trends that could transform how healthcare providers operate and deliver care.
If people in the U.S. are open to sharing more of their health information with providers, they could tip the balance when it comes to data sharing in healthcare. With better access to more medical data, healthcare providers along with standards-developing organizations, payers, and relevant government agencies could move the needle on interoperability in healthcare by facilitating data collection and EHR sharing for greater performance, enhanced care coordination, and better patient outcomes.
The question is—how much of that data can be utilized now, and are Americans willing to share more of their personal health information?
What Medical Data Do Patients Feel Comfortable Sharing?
It turns out that people may be ready for more data sharing in healthcare than you may initially think. A national survey conducted by The Pew Charitable Trusts found that 81% of American adults support “increased access to health information for patients and providers.” In addition, two-thirds of adults would like clinicians to exchange some health information not currently required by federal data sharing policies.
The Strategic Health Information Exchange Collaborative (SHIEC) conducted a national survey in 2019 that found 92% of the U.S. population is covered by a health information exchange (HIE), which is a larger database that allows participating healthcare providers to share and access EHR. For example, if a patient goes to a specialist who participates in an HIE that their primary care provider uses, the specialist can pull up select information about their medical history from their doctor’s EHR system thanks to the HIE. Currently, the United States Core Data for Interoperability (USCDI), the standardized set of health data in HIEs, requires the following data classes to be shared across EHRs:
- Allergies and intolerances
- Immunizations
- Medications
- Procedures
- Smoking status
- Demographics
- Vitals
- Lab results
- Care team
- Assessment/treatment plans
- Clinical notes
- Provenance (date, provider)
- Health problems, concerns, and goals
- Implantable device IDs
The Pew survey found that a large majority of Americans either don’t mind or actively want healthcare providers to share the USCDI required data. However, in addition to that, the survey found that Americans would also not mind or would want healthcare providers to share the following data among themselves:
- Radiology images and reports – 87%
- Advanced care plans or directives – 87%
- Substance use history – 74%
- Behavioral or mental health history – 72%
- Social determinants of health – 68%
- Insurance claims and billing – 67%
By sharing more information, such as radiology scans and reports, doctors could potentially reduce the amount of redundant testing done, which could save time and money for patients and providers alike. In addition, sharing information like behavioral and mental health, substance use, and social determinants of health, could offer doctors a more holistic understanding of a patient and health challenges they face. That information could allow them to offer better care and support to their patients. For example, if a patient routinely fails to fill prescriptions for medications that treat a chronic condition, perhaps there is a cost barrier that could be addressed to help increase medication adherence and reduce readmission rates to hospitals or emergency rooms.
How Can Healthcare Consumerism Support Data Sharing?
Consumerism in healthcare has become a trend in recent years that could also move the dial on data sharing. The idea behind healthcare consumerism is to empower patients to be active participants in healthcare decision-making to better meet their medical and financial needs. As part of that decision-making process, patients should also be able to access and transport their own personal health data as they move throughout healthcare systems.
Having access to their EHR can give patients the information they need about their own health histories to support better decision-making with the guidance of their healthcare providers. According to the Pew survey, 61% of Americans would like the ability to see and download their own medical histories from providers, particularly lab results, diagnoses, treatment plans, radiology and scans, and immunizations.
The use of health apps can also empower Americans to make better decisions for their overall health and well-being, and the number and range of health-focused apps has skyrocketed in the past decade. According to a report by the IQVIA, a clinical research, analytics and tech solution provider, more than 90,000 consumer health apps were released in 2020 alone, bringing the total number of health apps available to somewhere near 350,000. The demand for health-related technology and data sharing in healthcare is clearly there—what remains is a more effective and secure use of that data for providers and patients alike.
Privacy and Security Concerns in Health IT
When discussing personal information like medical history and health data, privacy issues come into play in a bigger way than with other types of user data. While the Pew survey found that many Americans would like their providers to share more information, there were concerns over privacy and the lack of patient access to their own medical records. Patient mobile apps or portals from healthcare providers that allow people to access their EHR must be HIPAA-compliant to ensure the security and privacy of that information. However, when it comes to health apps that allow people to download their own EHR from various providers to one place, data security may be a larger concern. The personal data downloaded to these apps is not covered by HIPAA or other federal laws related to privacy, which was very concerning to 62% of Pew survey respondents.
However, in a recent ruling, the U.S. Federal Trade Commission (FTC) has voted to require apps or devices that collect personal health information (PHI) to provide notifications to consumers when there is a data breach, or if their data is shared with third parties (like advertisers and marketers) without their permission. Any company’s failure to do so could lead to fines of up to $43,792 per violation each day as the FTC cracks down on digital tech companies that “play fast and loose with user data,” according to FTC chair Lina Khan.
The Roadmap to Enhanced Interoperability
The Pew survey demonstrates that the demand for data sharing with providers and patients exists for American consumers. With that in mind, what remains is to develop the roadmap to take this demand for increased access to health data and to ensure this can be used to enhance interoperability among healthcare providers.
The Office of the National Coordinator for Health IT (ONC) announced that the Trusted Exchange Framework and Common Agreement (TEFCA) will be completed for 2022. The TEFCA is part of the 21st Century Cures Act and aims to establish guidelines for interoperability standards for qualified health information networks (QHINs) throughout the United States. The goal is to create data sharing standards and a framework for QHINs to follow that will enhance security and streamline data sharing between EHRs to prevent information blocking—whether intentional or not. In his keynote speech at the 2021 SHIEC conference, ONC National Coordinator Micky Tripathi emphasized that information sharing is critical to enhanced interoperability among providers and implementing the TEFCA could be a key part of that goal.
As ONC works to develop TEFCA standards for data sharing in healthcare and interoperability, the fact that Americans have expressed a desire to expand information included in the USCDI should be considered. Having more patient data available could offer critical insights into population health management and ways providers can improve care coordination and health outcomes as patients move throughout a healthcare system. The value of big data in healthcare comes from being able to recognize population-wide health patterns, which can help providers and governments better address disparities in the system and determine where funding could best serve communities.
For assistance understanding or adhering to health IT regulation and policy, Audacious Inquiry offers health IT consulting to ensure our clients remain compliant and have the technology they need for better performance.
About the Author
Diana Bauza is a content writer based in the Greater Philadelphia area. She writes about products and services in the health and technology industries, with the goal of empowering consumers with quality information to help them make decisions that best serve their needs.