Health information exchange (HIE) reflects the electronic mobilization of healthcare data across disparate healthcare organizations. In so doing, the goal of HIE is to facilitate access to and retrieval of clinical data to ensure safer and more timely, efficient, effective, and equitable patient-centered care.
HIE systems rely on two main data architecture models. These can either take the form of a federated model, consisting of a central database harboring all patient records 1, or a decentralized model, without any such master database 2. Hybrid forms meshing these two structures have also emerged. Similarly, patient consent can also be handled according to two distinct methods. Patient consent can be obtained by explicit consent, according to an “opt in” method, whereby a patient is not automatically enrolled into the HIE by default and generally must submit a written request to join the exchange, or by obtaining implicit patient consent, by an “opt out” method, whereby patients are automatically enrolled in the HIE but can choose to deliberately opt out 3. Under the provisions of Title 45 of the Code of Federal Regulations however, medical providers are not legally required to agree to restrict a patient’s records when doing so would unnecessarily interfere with quality healthcare. This issue surrounding the use of an ‘opt out’ versus ‘opt in’ model remains controversial, and further consideration will be needed.
HIEs have a number of advantages. A recently conducted literature review highlighted fewer duplicated procedures, including imaging, and heightened patient safety 4. In so doing, HIE systems also naturally facilitate clinicians’ efforts to meet high standards of patient care through participatory medicine and patient continuity of care 5,6. Resulting from this increased efficiency, HIEs enable cost reductions. Associated outcomes include reduced repeat imaging costs 7, streamlined emergency care and reduced hospital admissions via greater access to patient data 8, and minimized diagnostic test utilization and associated healthcare costs. One study found a $1.07 million net cost reduction in all major emergency departments in Memphis, Tennessee over a 13-month period 8. HIEs may also be essential to public health authorities in the context of large-scale epidemiological analyses of population health, including for targeted public health surveillance programs such as for diabetes and hypertension 9,10. More recently, these have been critical to uncovering COVID-19-associated risk factors 11.
HIE efforts have been increasingly supported by statewide grants and novel federal regulations and incentive programs. Many HIEs have been met with sustainable success at local, regional and national levels. The Netherlands, for example, has been a pioneer of HIEs, hosting many successful, well-coordinated regional HIE networks: the Frysian Health Information Exchange successfully connects the large Leeuwarden Medical Centre and Groningen Academic Center with local community hospitals. In addition, a recent study found that the United Kingdom, Netherlands, Australia, and New Zealand had nearly universal use of electronic health records among general practitioners, each exceeding 90%, with HIE efforts, despite varying degrees of active clinical data exchange, remaining an imminent priority 12. To meet these new standards, new national policies in the United States have been implemented to accelerate the pace of HIE use 13. However, these remain in a state of constant fluctuation as they incorporate real-time feedback from the first iterations of HIE systems.
Despite the promise and preliminary success of HIEs, important challenges remain. First, with regard to patient consent, American HIEs must not only comply with Health Insurance Portability and Accountability Act (HIPAA) laws, but also with an amalgamation of dynamic state and federal regulations 14. Second, beyond isolated exceptions such as the Indiana Health Information Exchange15, HIEs have struggled to reach financial self-sustainability as the vast majority remain reliant on independent, state, or federal grant funding. Despite having revolutionized clinical care, HIEs in the years to come will continue to face many ongoing technical and regulatory challenges which will need to be met with data analysis and legal coordination.
References
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15. Indiana Health Information Exchange – Your Healthcare Records Matter. https://www.ihie.org/.