A Transparent Health Record

By Adrian Gropper, MD

Transparency, in the form of a complete, patient-centered and accessible health record is a policy principle that can drive the next wave of health care innovation. Investing exclusively in institutional EHRs will further stifle efficiency, innovation and improvement. Web-based clinical summaries (CCR+DICOM+PDF) that are available for patient control foster patient-centered care, clinical collaboration, and research, and must be included in health care reform if we are to effectively improve provision of health care for patients and clinicians.

We've been stuck on interoperability long enough to realize that EHRs are a tool and not a solution. To frame the problem, the National Research Council weighs in with a timely assessment and vision. A great summary by David Kibbe highlights the caution: "that current efforts aimed at the nationwide deployment of health care IT will not be sufficient to achieve the vision of 21st century health care, and may even set back the cause if these efforts continue wholly without change from their present course."  In the same vein, a recent Booz, Allen, Hamilton report, sponsored by the Federation of American Hospitals, reminds us that "Other countries experience shows that EHR adoption does not automatically lead to interoperability."

Practically speaking, a health record is transparent and complete if it can serve as the basis for an effective second opinion, patient transfer to a different facility and coordination of treatment across multiple independent practices. As Kibbe highlights in his post, the NRC report recommends the separation of data from applications in "shareable and generally useful formats". This can already be achieved by encouraging the technologies that Google Health, Microsoft HealthVault and MedCommons deploy as the Web health records ecosystem. This ecosystem is based on relatively simple and practical standards voluntarily adopted by application vendors that start out from a patient rather than a provider perspective.

The connection of the patient-centered Web health records ecosystem to institutional health IT will be hastened or impeded depending on the specifics of health IT legislation. For example, a patient-centered interpretation of HIPAA could mandate that practices give patients their complete health record in the "shareable and generally useful formats" CCR, DICOM and PDF over the Web at the negligible cost of a digital copy.

The recently introduced House Ways and Means bill clarifies or extends HIPAA along these lines. Here is how a HIMSS summary of the bill puts it:

"In the case that a covered entity uses or maintains an EHR with respect to PHI, the individual has a right to obtain from the covered entity a copy of such information in an electronic format. The fee provided by the covered entity to obtain this information may not be greater than the covered entity's labor costs in responding to the request."

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.