Health Record Banks Facilitate Consumer Control and Promote Privacy

Michael Porter’s Support for Health Record Banks

Many advocates of health care system reform have been avidly reading Redefining Health Care by Michael E. Porter and Elizabeth Olmsted Teisberg (Boston: Harvard Business School Press, 2006), which advocates moving to a system of value-based competition based on results. In it, the authors clearly recommend the health record banking approach:

“Today, medical records are scattered. There are separate records at individual physician offices and at various treatment facilities. Specialists usually send summaries to the patient’s primary care provider or family physician, not the full record of their care. Records are not kept in a form that is easy to integrate.

Current proposals for records management aim to facilitate requests for records, when needed, from the various providers (the so-called pointer system). However, this approach is cumbersome, technologically questionable, and inherently costly. Patients need to have ownership of their own medical records. They need a secure, complete personal medical record that is all in one trusted place (though there is no need for everyone’s records to be in the same place). Electronic availability (with appropriate permission) will enable records access on a timely basis and in emergency settings.

A trusted third party will be needed to play the role of maintaining, accumulating, and verifying the patient’s records and making them available when, and only when, the patient has given approval.” (page 272)

As work continues across the U.S. and elsewhere to build health information infrastructure (HII) allowing “anytime anywhere access to complete patient information and decision support,” a consensus appears to be emerging on the closely related issues of consumer control to assure privacy and the need for health record banks that is consistent with Porter and Teisberg’s views.

Patient Control of Access to Their Electronic Health Information

With respect to patient control of access to their own health records, a recent report entitled “The Way Forward for NHS Health Informatics” from the British Computer Society reviewed the HII efforts in the U.K. and recommended that “… informed patient consent should be paramount [in the sharing of electronic patient data].” (recommendation 1.12 on page 4)

At the January, 2007, Nationwide Health Information Network (NHIN) Forum in Washington, DC, all four of the vendors demonstrating prototype architectures and every other speaker who discussed the topic agreed that patients should control all access to their electronic medical information. Interestingly, there was essentially no discussion or questioning with respect to this point — it appears to now be an accepted conclusion.

The idea of patient control is not new. Mandl et al suggested this as a key principle in an article in the British Medical Journal in 2001. What makes the recent developments remarkable is that this truly patient-centric view has not been clearly articulated before (at least in the context of an NHIN meeting), much less accepted as a key requirement.

This is a very positive development, as it seems clear that the general public will not accept electronic health information systems unless individuals control access to their own records. For example in a 2005 national survey, 79% of respondents indicated access to such information should require their permission. There is good justification for this. As Mandl et al point out, “If patients feel that they have no control over the fate of their medical information, they might fail to disclose important medical data or even avoid seeking medical care because of concern over denial of insurance, loss of employment or housing, or stigmatisation and embarrassment.”

Finally, Dr. Robert Kolodner, Interim National Coordinator for Health Information Technology at the U.S. Department of Health and Human Services, announced this past week that the upcoming RFPs for “trial implementations” of community HII systems would require technology implementations that allow patients to control the detailed flow of their own information — deciding how they “view, store, and control access.” In this way, the technology will be able to support consumer control at the data item level. While providing such control in health record systems is not currently required by law or policy, incorporating these capabilities ensures that the “technology will not drive the policy” with respect to privacy. This is a wise and prudent approach to HII technology.

Need for Health Record Banks for Secondary Data Use

Another interesting development at the January NHIN Forum was the acknowledgement by all four of the prototype developers that efficient secondary use of electronic health information required the establishment of one or more data repositories to facilitate searching. Activities such as identifying subjects for clinical trials, public health monitoring of disease trends, and assessing potential unexpected outcomes of therapeutic interventions on a population basis, clearly require the availability of searchable databases. As has been pointed out in previous postings here, this creates a need for health record banks where copies of complete patient records can be accumulated under strict patient control.

The provision of consumer control at the data item level will also require the health record bank approach, since it is extremely difficult to provide consumers with the ability to decide what information they wish to share unless the information itself is available to be directly linked to consumer permissions.

The Time Has Come for Health Record Bank Implementation

The State of Washington has recently recognized the advantages of the health record bank approach to HII. After a 16-month process of study and review, the Washington State Health Information Infrastructure Advisory Board (HIIAB) (created by the Legislature) released its final report in December, 2006, recommending the development of multiple health record banks containing consumer-controlled copies of health records from multiple sources. The Governor’s request for $9 million in seed funding for implementation efforts is now being considered by the Legislature.

As I indicated in a recent editorial, it is time for health record banks to be built and made available to consumers. Hopefully, 2007 will be the year that we begin to build the foundation for a safer, higher quality health care system by creating the health record banks consumers need to make their complete electronic medical records available for their care while fully protecting their privacy.

3 Responses to “Health Record Banks Facilitate Consumer Control and Promote Privacy”

  1. Health records data banks that are controlled by patients will not only address many of the privacy concerns that consumers have over the use of their information but help move us towards a systemic approach to wellness and away from episodic care.

    Even though we are seeing many of the larger IT corporations moving into this segment (for example, Revolution Health the Health company started by Steve Case of AOL) their financing schemes are based on advertising not cost savings to the system and it raises serious concerns about selling your information.

    In the March 5th edition of the San Francisco Chronical there is an article “Personal Health Web Sites Pose Privacy Risks for Patients” that discusses fears of what might happen when purely private sector players are involved and consumers aren’t helping design the system. “Current federal regulations does not apply to personal health record companies unless they also are health care providers or health plans, so the disclosure of medical records to a PHR firm loses the protection of federal health privacy laws” although some current federal legislation might change this soon.

    On the other hand giving researches access to registers is a powerful research tool so we don’t want to exclude it simply implement the same safeguards that traditional financial services have developed.

    There are however some amazing examples of effective successful health care banking systems that are already in operation. Many people don’t realize that 10% of the population, those with chronic conditions account for up to 70% of all health care costs and there are real costs savigns that can happen when you focus on this population.

    One of the most powerful experiments revolves around the use of patient health record banks for people with chronic conditions. There is an amazing Institute for HealthCare Improvement (IHI) demonstration project here in Washington State (Whatcom County). In a public private partnership, people with chronic conditions – diabetes, heart disease helped to design an online medical record that gave all of their providers access to a shared care plan and a web site for patient education as well . This was coupled with multi-disciplinary care teams headed up by clinical care specialists who helped educate and advocate for the patients. The providers utilized the latest in evidenced based medicine to develop disease management protocols.
    (click on my name for a link)

    The results were striking, over 600 patients enrolled in the program. “It is already greatly improving public health and promises to bring much more business to local pharmacies, as more people are prescribed medications to manage their chronic conditions and will also save Medicare lots of money.”

    An interesting problem has emerged however, 600 people are enrolled at costs savings of $3,000 per patient, “but projections show that, between 2001 and 2008, the initiative will cost the local hospital $7.7 million in lost revenue, and reduce the income of the county’s medical specialists by $1.6 million.”

    So who will pay for the program? Today, the initiative survives only by attracting philanthropic support, and, more recently, a $500,000 grant from Congress but they are working on a new financing model and hope to expand the program.

    In order to deliver high quality care it isn’t enough to simply provide the technology that links consumers and health care providers without changing the reimbursement scheme as well.

    Many of the latest attempts to increase cost sharing, like high-deductible HSA’s actually back-fire over time as they actually discourage patients from taking preventive measures and don’t use financial incentives to encourage healthy behavior. They also fail to focus on the cost drivers in the chronic care model (diabetes supplies, co-pays for medications, etc) where the greatest opportunity for both cost savings and increased health benefits lie over the long term.

    Health record data banks are one critical step in changing health care at a systemic level but by itself is insufficient to bring about real change. We need to us technology to put the patient at the center, share date in real time and convert it to knowledge but the critical next step will be to use that knowledge to bring about behavior change in patients, providers, payers and health care systems.

    Sherry Reynolds
    Cascadia Development & Consulting
    Consumer Directed Health Care Coalition

  2. JP says:

    I agree, empowered patients are healthier people. Have found that tracking patient records for mother’s illness via website made the communcation with numerous health care specialist much simpler and mitigated confusion during stressfull times.


  3. I think it’s difficult to expect that a patient will be a partner in his or her care plan if s/he doesn’t have ready access to the playbook and the scorebook. Sort of like asking a baseball player to improve his batting average with blinders on.

    EMR Software Guy

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