A Transparent Health Record

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.

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9 replies »

  1. Social Security spends millions of dollars each year obtaining medical records for Social Security Disability claims. A separate request has to be made to each doctor, in paper. Some respond some don’t. Some of the doctors offices are now closed where pertinent records may be. Good luck tracking those down.

  2. The program proposed consists of a Utopian dream, not supported by any relevant performance and with blissful ignorance of the misuse and loss of privacy inherent in any large system.
    The record of the federal government in developing, deploying and managing systems is not encouraging. One needs only to look at the historical performance of the FAA, USPS, DOJ, FBI etc to find computer systems that cost far more than budgeted, were delivered long after promised, failed to perform and were filled with worms and security breaches.
    Despite pledges of privacy we have seen the FBI investigative files distributed to political operatives, repetitive large scale intrusions into supposedly secure data bases, govt employee misuse of data and a host of other problems.
    The personal privacy issues are great. A young woman has an abortion, a young man is treated for drug dependency, the holder of a politically sensitive job (or candidate) was treated for a social disease while married-all of these will serve as the foundation of attacks and potential blackmail.
    The answer is perhaps a voluntary system where the patient has the right to exclude any treatment from the record.
    The potential mischief instituted by well meaning but inept bureaucrats knows no limits.
    To tuck this concept into the Stimulus Bill without careful scrutiny breaks many of the promises Obama made to the American people ……..

  3. Simple systems / summaries available to patients = great idea. CCR works – it is not a magic bullet (nor is any other standard) – it is typically a snapshot in time – but it works for interoperability. In fact, we’ve had pretty good success in different initiatives using / maintaining a longitudinal summary of patient needs and communicating it with loose coupling in CCD or CCR format.
    Electronic Records clearly have different purposes. (Care, Quality, Communication, Safety, Workflow, Billing…). The incentives in the Federal Gov’t HIT bills (Senate Markups and House Bill) push for certified interoperability and exchange for improving chronic care, quality reporting and other purposes. Hopefully the certification process that comes out of Sec’y of HHS and ONC and NIST engagements certifies for the right FUNCTIONS and workflow that improve care (as discussed in NRC research report).

  4. Transparency I think means vision toward achieving the goals outlined by the IOM (1996) : safe, effective, patient-centered, timely, efficient and equitable care.
    I guess 1996 is so long ago and the US has become so complacent that none of this matters anymore…
    It might help if we got the tax dodging, non-profit trade organizations out of the way.
    Example: http://himss501c6taxdodger.blogspot.com

  5. @A.A.
    I’m hoping to define transparency with regard to the patient or their specifically chosen advocates. This need not imply consent to anyone else (payors, ER docs or anyone in between) for access to complete and aggregated information. “Rethinking the Role of Consent in
    Protecting Health Information Privacy” [ http://cdt.org/press/20090126press.php ] is a detailed review of the privacy issue you raise.

  6. While I agree with the right and need for patients to have access to and manage their own patient records, I am not sure this will address cost of care nor quality of care. Physicians, staff and patients need to focus on sharing information for improving a patient’s health, early detection of disease, and speeding the time to recovery. The current business structures, payment structures and laws are a real impediment to achieve this. Technology is only a tool.

  7. While I agree with the right and need for patients to have access to and manage their own patient records, I am not sure this will address cost of care nor quality of care. Physicians, staff and patients need to focus on sharing information for improving a patient’s health, early detection of disease, and speeding the time to recovery. The current business structures, payment structures and laws are a real impediment to achieve this. Technology is only a tool.

  8. Why would we ever want transparency without total coverage against pre-existing conditions?