Providing patients with direct access to their health information while assisting in gathering and applying population-level health data is a critical step in the move to whole person care and improved care coordination. As part of the push to achieve that goal, the Office of the National Coordinator for Health Information Technology (ONC) released a draft of the Trusted Exchange Framework and Common Agreement (TEFCA). This framework aims to further the goals of the 21st Century Cures Act, namely in accelerating development and innovations across the medical field, with a particular focus on data exchange and interoperability among providers and patients.
The data exchange calls for the establishment of several qualified health information networks, or QHINs. QHINs are a network of organizations working together to share data and ensure interoperability across the broader network. These networks in turn provide for greater access to health information for both patients and providers across the entire system. Among the many potential benefits of such a system, two key benefits emerge: patient-centered care and improved care coordination across providers.
Patient-centered care focuses on individual health needs and outcomes while making the patient a partner with the provider. The ONC data exchange enables patient-centered care by increasing patient control over their data in determining who has access to their electronic health record (EHR) and improving the patient’s ability to make decisions about their care in conjunction with providers of their choice. In 2017, only about ten percent of patients shared their EHR data, and the data exchange hopes to encourage and simplify that process in order to improve health decisions.
In terms of care coordination, the ONC data exchange improves interoperability among providers across different networks by standardizing API connections and data sharing. Additionally, the ONC is tackling issues related to information blocking and the practice of restricting access and exchange of health information. Improving interoperability of varying systems and removing blocking restrictions are key steps in enhancing care coordination across medical providers and supporting organizations.
The ONC data exchange is not, however, without some risks and concerns. Included in those concerns is the need to adjust many of the contractual relationships between the various organizations, handling increased costs related to administration work and adjustments, as well as the 21st Century Cures Act’s own mandate of achieving significant progress by 2019.
There are still significant questions remaining around how the ONC data exchange will handle security, research, and secondary uses of data gathered and exchanged through the system, including questions of the contractual relationships already in place. Indeed, it is possible that each participant agreement will need to be adjusted to account for the changes proposed by the ONC, accounting for potentially significant time and expense.
The infrastructure that may be required to operate a QHIN could also prove to be a significant burden, especially when considering the goals and timeline established by the 21st Century Cures Act. While there is some hope that the QHIN operation and governance standards could be based on existing collaborative systems, any move to establish, expand, or adjust existing partnerships will certainly include costs and added complexity. It is important for organizations to have a knowledgeable partner who can help them navigate these changes.
The ONC data exchange represents a significant step forward in providing for improved data sharing and care coordination across providers and patients. It also demonstrates both the need and the opportunity to improve interoperability across the various providers and organizations in the medical industry. While there are certainly obstacles to overcome and risks that should be addressed, the ONC data exchange represents a worthy and significant opportunity.