An example of a ‘public good’ implemented within many RHIOs is the potential capability to quickly and automatically locate and retrieve most relevant electronic health records for a patient. This capability could be thought of as a public service-like function, readily available to all authorized providers but not necessarily economically viable to create or self-supporting.
The ability to quickly and automatically locate most relevant electronic records for a patient was a critical design feature of early RHIOs.8
Between 2005 and 2007, ONC9
and the Markle Foundation, through a group called ‘Connecting for Health,’10
developed and tested prototype designs for health information exchanges that focused on regional, and later inter-regional, exchange of health information and patient records. To be able to retrieve electronic health records for an individual in a region, RHIOs had to maintain two critical components:
- A list of the vast majority of individuals in the community with linkages to the different medical record numbers used by different medical providers and health systems (called a Master Patient Index, or MPI), and
- An index or a web service capable of determining the locations and types of medical records across the community for a particular patient (called a Record Locator Service, or RLS).
How common is it for medical professionals to need to retrieve summaries of care for patients? In emergency departments (ED) and consultative medicine, data from patient records are often needed to provide optimal care and reduce redundant diagnostic testing, but such data are all too often not available. Patients who visited multiple EDs accounted for 22% of all visits to EDs in the central Indiana region.11
In clinical consultations, Gandhi and colleagues reported 68% of specialists did not receive prior information from referring primary care physicians,12
let alone records from other physicians in the community. Moreover, it is relatively easy to find compelling clinical use cases for access to records from other institutions. For example, in the UK, a motivating example for the creation of its summary record system was the case of journalist Penny Campbell, who died of sepsis related to a recent procedure after seeing eight different physicians for her symptoms.13
At present, however, retrieval and use of information from remote systems is an at-the-point-of-care clinical workflow issue that is subject to failures from many technical causes.14
In the USA, in one RHIO focused on Medicaid and indigent patients, retrievals occurred in just 2.6% of cases.16
Similar results were seen in a UK study of access to ‘summary records’ within an NHS demonstration project—access occurred in just 4% of cases. Qualitative studies subsequently explored the rationale for the low rate of access. Researchers identified physician beliefs of a low probability of finding information as the primary reason for not using the system. Interestingly, when patients had summaries available online, summaries were accessed frequently (22% of encounters).17
Johnson and colleagues also observed that access to regional health information exchanges in EDs increased from 6.8% to about 15% among patients with return visits.18
Therefore, it seems likely that if RLSs were widely available, they would be used in clinical practice.
Maintaining a community level RLS capable of producing a summary of care across different computing environments of differing healthcare organizations is complex.19
However, once the initial work is performed, MPI and RLS technology can support a wide range of quality improvement and population health activities at a community level that are potentially valuable, if not economically viable, services that might include medication resolution, reminders to patients of needed preventive services, and alerts for public health issues.19
These community level activities, and others, are a focus of ongoing work in the ONC's Beacon Communities Program.
RHIOs also serve other functions in communities that may be difficult to duplicate at a state or national level. Foremost among those purposes is a forum for developing consensus-based data use and reciprocal support agreements (DURSAs) among healthcare data across entities within a region.21
DURSAs contain the policies related to use and re-use of data for research purposes, system access, security, patient access, and consent. DURSA agreements play an important role in the dynamic security of data exchange, specifying security levels, logging and tracking of transactions, and responses to findings of malicious software.