Twenty years have passed since the Institute of Medicine identified electronic health records (EHRs) as "an essential technology for patient care." However, despite much activity, and some progress, comprehensive electronic patient records are still not available to providers of care.
Most of our efforts thus far have been focused on automating our current record retrieval process: When a patient presents for care and has records elsewhere, a manual request is made to the outside provider and the records, if available, are typically faxed to where they are needed. We have mistakenly believed that if we could just automate this process with electronic health information exchange (HIE), all would be well. This provider-centric approach addresses the wrong problem. Each provider’s records, even if electronic, are not complete patient records.
Treating the symptoms of missing records by automating our current manual "fetch the records" process will not fix this. The locations of all the records for a given patient are not generally known or recorded. Every provider must have an EHR system able to respond immediately to a record request from any other provider (a combinatorial explosion of potential connections). Provider sharing of records is totally voluntary. Records from multiple sources must be correctly identified and integrated in real time. Protecting privacy is very difficult since patient information is located in many different systems. The scattered patient records cannot be feasibly searched for public health, public policy or medical research purposes, eliminating our opportunities to use this information to detect patterns and improve care. Finally, there is no clear business model for sustainability.
Last year's report from the President’s Council of Advisors on Science and Technology concluded that current HIE efforts through the states "will not solve the fundamental need for data to be universally accessed, integrated, and understood while also being protected." Findings of a recent survey of HIEs "call into question whether RHIOs [Regional Health Information Organizations] in their current form can be self-sustaining and effective."
The right problem is ensuring the availability of comprehensive electronic patient records. Solving it requires a patient-centric approach. Imagine each patient having their own secure and private electronic "checking account" for their medical records. At the point of care, the provider immediately accesses the records from the patient's account, treats the patient and deposits the new information generated. Providers still keep their own records, but each patient controls their complete record of care from all sources.
This approach, known as a health record bank (HRB) or "patient-controlled EHR" (PCEHR) is already in use in Singapore and Denmark, and is being implemented in the Netherlands. Australia just awarded a large contract to build a PCEHR system by mid-2012. Aided by seed funding from Washington State starting in 2009, several small HRBs are now operational there.
The functions of an HRB are simple and inexpensive. HIPAA requires all stakeholders to cooperate in providing medical records to an HRB, since the requests for data come from patients themselves. Each provider only needs a single data interface - between their EHR and an HRB. New HRB deposits need not be integrated into the patient's account instantaneously, allowing time to resolve ambiguities or exceptions in the data. Innovative applications providing compelling value to consumers and other stakeholders (e.g., reminders and alerts) can be linked to HRB accounts, ensuring more than enough revenue for financial sustainability. HRBs also could fund permanent, ongoing EHR incentives to office-based providers to promote widespread adoption and standards compliance. Finally, privacy is protected since each patient determines who accesses which portions of their own health record account and can change their access permissions anytime.
This past week, the Office of the National Coordinator (ONC) announced its Consumer eHealth Program, with pledges from a variety of health care providers and health IT vendors to ensure that consumers can easily send their electronic records to a PCEHR. A new regulation allowing patients to receive their results directly from laboratories was announced, representing an important step forward in guaranteeing patients access to their own data. Hopefully, this is the beginning of our large-scale transition to a truly patient-centric EHR system.
To solve the right problem - ensuring ubiquitous, immediate availability of comprehensive electronic patient records - we need health record banks.
William Yasnoff, MD, PhD, FACMI, is a health IT consultant and President of the Health Record Banking Alliance. His prior work at HHS resulted in the creation of ONC in 2004. He is the author of the Health Information Infrastructure chapter in the textbook Biomedical Informatics (Shortliffe & Cimino, eds.).
