Complete digital health records over the Web are not expensive nor technically challenging. For years, hospitals have been sending the Social Security Administration (SSA) complete digital records to back up disability claims. In fact, SSA is moving to mandate digital submissions. Shouldn't the patient have access to their own records at least as conveniently?
Imaging in DICOM format and legacy documents as PDF are essential for a complete health record. For the EHR component, the Continuity of Care Record (CCR) was explicitly designed for the portability of patients between institutions and is the only widely used clinical summary format. As a summary, the CCR can easily manage links between imaging, documents and problems across institutions. This makes a thorough CCR clinical summary the key to cost-effective decision support as well as transparency for fraud protection and patient safety.
The patient-centered Web health records ecosystem addresses privacy, patient identity and change management using well understood Web protocols such as OAuth and ATOM. It still needs work on proving the authenticity of a lab result or immunization. These technical issues are not specific to health care and will be addressed simply and efficiently if our health IT policies do not interfere.
Lack of transparency is as much a problem in heath care as in finance. The new administration surely knows that EHRs do not inherently promote transparency and EHR subsidies could do more harm than good. Healthcare reform in the US can benefit from the experience of centralized and bureaucratic health IT projects in other countries by protecting and even nourishing the patient-centered health records Web that is emerging all around us.
Adrian Gropper, MD is a founder of MedCommons, with roots in patient-controlled and patient-centered health records that go back to MIT's Guardian Angel project. AMICAS, a more recent radiology-focused venture, pioneered the clinical use of Web browsers and protocols. Adrian is driven by the vision of doctors and patients collaborating around shared health records on the Web.
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