Back to Basics: Toward a Core Set of Relevant and Portable Personal Health Information


In the cacophony of health IT issues, products, and goals that compete every day for our attention, it is easy to lose sight of the profound value that could come from the universal availability of a simple core set of relevant and portable personal health information in digital format.

If everyone in the country who wanted one, and if every doctor or nurse taking care of a patient needing one, had access to a digitally formatted set of current health data about the person in question, we as a country would benefit at many levels.  I am talking about basic information — such as demographics, a problem and diagnosis list, a list of medications, allergies, recent vital signs (blood pressure, weight, etc.), and information about the most recent health care encounters. Individuals would get more continuous care and better coordinated care decisions.  Payers would pay for fewer duplicated or unnecessary tests and procedures.  Doctors would face less risk of error when making decisions in the ER.  Researchers would give us better feedback on populations of patients, e.g. those with diabetes, to improve care and care processes.  And the whole of society would benefit from a real-time, steadily enhanced knowledge database about what works to promote wellness, health, and to lower health care costs.

Achieving these benefits could come from many different methods of storing and transporting a Continuity of Care Record.  A piece of paper in PDF or Word format is better than no data at all; a computerized text file on a USB device is better than paper; an HTML web page at an always-available URL is better than a text file; and a computable, machine-and-human-readable XML file compliant with a standardized XML schema is still better.  But any and all of these are preferable to the current default for millions and millions of health care visits: no-information-at-the-point-of-care-or-decision.  Zip. Nada.

Access to a Continuity of Care Record is so obvious an individual and public health need, and so necessary a first step for us to achieve improvement in health and medical care in this country, that it seems worth advocating for.  In fact, a number of interests have been urging the adoption of a national policy of access to a Continuity of Care Record, and more have come forward recently.  The American Academy of Family Physicians and the American Academy of Pediatrics were among several physician membership organizations that, starting in 2004, led in the effort to create the Continuity of Care Record standard, or CCR, an XML format now used by Google Health, Microsoft HealthVault, and MinuteClinic, among many others, to create and securely transport a designated set of health information that is both human- and machine-readable.   HealthDataRights.org is one of several multi-stakeholder efforts that have taken a public stance on patient/consumers’ rights to their own health data.   Health plans, large provider organizations, and several of America’s largest employers, including Wal-Mart, have joined the Health 2.0 community in support of patient/consumer access to an up-to-date, secure, and accurate set of health information, as indicated by the many partners and collaborators that Microsoft HealthVault, Google Health, and Dossia, have attracted to their patient-controlled personal health record platforms.  Mayo Clinic, the Cleveland Clinic, the VA Health System, and Kaiser Permanente have all launched PHRs and are engaged in patient-controlled access and transport of personal medical information.

So…Why have we not yet reached a tipping point, a critical mass of creators and users of Continuity of Care Records?  After all, users of the Apple iPhone downloaded over 1 billion applications in less than a year, and the surge of interest in iPhone apps has led to the development of over 85,000 of them during this short period.

The problem is not technological. Consider that most of the data are available in electronic format already. For example, almost 100% of pharmacy data — information about what drugs we take, how often, who pays for them, etc. — now exist in electronic databases and are transported in digital formats.  The same is true for laboratory and test results, for pathology and radiological studies, and for clinical images such as MRI and ultrasounds.   Health plans and insurance companies also possess large stores of personal health information in electronic databases — virtually everything that gets paid for goes through their computer systems — which they are increasingly analyzing and organizing in order to spot gaps in care and to offer both patients and doctors alerts and reminders for evidence-based tests and preventive measures.   These sets of information are often labeled “administrative data,” as opposed to clinical data, but in reality there is much overlap between them and no clear demarcation.  A list of current medications is personal health data of relevance, no matter whether stored by a health plan or a pharmacy, or both.

No, the reason why we as citizens lack routine access to even the most basic summary of our personal health information, and therefore can’t put those data to work for us as individuals or as a society, is that we lack the political, cultural, and professional will to unite these disparate and unconnected bits and pieces of information together into a Continuity of Care Record.*

This may be about to change as a result of the Obama administration’s new regulatory activism in the area of health IT.  Most observers see the legal mandates of ARRA/HITECH as being aimed at coaxing physicians and hospitals to increase their adoption of EHR technology, for which incentive dollars totaling in excess of $30 Billion have been authorized.  This is indeed the case.

But ARRA also states, in part, “…the individual shall have a right to obtain from such covered entity a copy of such information in an electronic format and, if the individual chooses, to direct the covered entity to transmit such copy directly to an entity or person designated by the individual, provided that any such choice is clear, conspicuous, and specific.”   This is, essentially, a re-statement of the requirements of HIPAA that patients/consumers have a right to their health information, and adding the obligation to make this information available in electronic (digital) format. Finally!

What is encouraging is that the definition of Meaningful Use issued by ONC, by way of turning the legislation into federal regulation, includes amongst its set of specific activities health care providers need to undertake to qualify for incentives from the federal government, a requirement that doctors and hospitals must do the following:

  • Provide patients with an electronic copy of their health information (including lab results, problem list, medication lists, allergies) upon request.
  • Provide patients with timely electronic access to their health information (including lab results, problem list, medication lists, allergies).
  • Provide access to patient-specific education resources.
  • Provide clinical summaries for patients for each encounter.

Source: Health IT Policy Council Recommendations to National Coordinator for Defining Meaningful UseFinal- August 2009, http://ncvhs.hhs.gov/090518rpt.pdf

Perhaps 2010 will be the year we finally get back to basics and provide patients and consumers with their own summary health data in digital format.

* Well, this isn’t entirely the case.  If you’re one of the relatively small handful of patients who receive care in small number of very large health care systems, e.g. Kaiser or InterMountain Health, your personal health data may be available to you through a PHR into which data feeds from those systems’ computerized data centers.  But even in the big systems, relevant personal data may not collected in a user-friendly way.  Witness the fiasco that occurred when e-Patient Dave tried to transfer data from Beth Israel Deaconess Medical Center to his Google Health account. All Dave wanted was for his hospital and doctors to help him aggregate his most important health information is a secure and accessible place online.  What he got, even with the assistance of uber-CIO John Halamka, was a very large and very incorrect set of billing codes, some for conditions Dave never even had!

David C. Kibbe MD, MBA. is a Family Physician and Senior Advisor to the American Academy of Family Physicians who consults on healthcare professional and consumer technologies.

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21 replies »

  1. MD as HELL
    Unfortunately, the majority of patients want copies of their records and you are obliged by law to provide them. All the complaining you or others might do, won’t change those facts. You’re just going to have to live with them, like it or not.
    I agree that meeting these requirements shouldn’t place an undo burden on the physician which is why in our MedKaz™ System the doc is paid for updating a patient’s record. By embracing the MedKaz™, the typical PCP will take home an additional $25,000 or more per year (that’s after expenses). When’s the last time someone offered to increase your income with no strings attached?
    What’s more, you and every other care provider who treats your patients will have their complete record from every care provider in front of them, so they/you can treat your patient better, avoid mistakes and avoid unnecessary tests. Isn’t that what you want/wanted to do when you chose medicine as your profession?
    With regard to your suggestion that we create a program for patients to write their own medical records, you are missing the whole point. The point is not to satisfy a patient’s morbid curiosity about their health. It’s to aggregate a patient’s records so care providers have the information they need to treat the patient when and where they need it. Given this objective, would you rely on patient-entered progress notes, etc.? Of course not. You correctly would want as much clinician-provided data as you can get — which is what we are out to give you!

  2. Why don’t you create a program for patients to write their own medical record? Why does the doc have to do it?

  3. Mr. Bushkin,
    I am only contrary to most of the bloggers here. A majority of the country does not trust the government to run healthcare, nor to keep secrets.
    You vendors have every right to offer a product to silling consumers. Quit trying to shackle me to produce at my expense your product.

  4. MD as HELL,
    Glad to see you “like being the voice of the individual, clamoring for freedom….”
    Just understand that you are an individual out of step with considerably more than the majority of other individuals. They want their records — and some of us well-intentioned vendors will make sure they get them and benefit from having them.

  5. bevMD,
    I enjoy what I do now. I also like being the voice of the individual, clamoring for freedom from the well-intentioned but sorely misguided vendors who think the world needs this product. It does not.
    But your diagnosis is noted. And were you my doctor and were you to put that in my EHR for the universe to view, I would sue your ass for impuning my character and my motives, causing me great anguish and damages in the 7 figure range.

  6. I agree with David Kibbe that there is a problem with individuals lacking routine access to even the most basic summary of their personal health information and that this problem is not technological. Instead of characterizing the cause of this lack of access via a CCR as a lack of “political, cultural, and professional will,” I suggest that it is merely a manifestation of a health system that “has generally been paternalistic and provider-centric and [in which] patients have not been expected to be involved in the process.” (Institute of Medicine, “Report Brief on Preventing Medication Errors,” 2006)
    The cited report estimated “there are at least 1.5 million preventable ADEs [adverse (injury-causing) drug events] that occur in the United States each year,” and recommended as the first step to preventing medication errors “to allow and encourage patients to take a more active role in their own medical care. …Patients should understand more about their medications and take more responsibility for monitoring those medications, while providers should take steps to educate, consult with, and listen to the patients.”
    Basic health information that would be found in a CCR includes a record of medications that could be accessed by the patient as well as other health care providers. Dr. Seebode is correct to observe that a personal health record can facilitate communication between physician and patient. More importantly, however, when health care providers spend precious resources to make CCRs readily available to their patients, they are sending a strong message that they are expected to be involved in their own medical care.

  7. Bev, I’m not defending the Caritas system, but this is different than patients asking for their records. Those were obviously paper records and somehow the two docs already had them in their office. Caritas wanted them back and eventually got them.
    I’m not sure what the common practice is regarding “docs taking their patients” when they leave a practice, but obviously these guys never settled this issue in advance. If Caritas had only electronic records, I have no idea how the two departing docs would have gotten anything to start with.
    Maybe they should have asked the patients before the separation if they wanted to go or stay with Caritas.

  8. MD as HELL:
    My diagnosis is burnout. Leave medicine and go do something you enjoy – seriously. Been there, done that.

  9. Margalit;
    The point I was making about Levy’s post is that the Caritas Health system felt that IT owned the record completely, and wouldn’t allow any part of it to go with the patients’ doctors. Whether a CCR or an EMR, NOTHING was to leave the system. This attitude is the antithesis of patient-centered.

  10. MD as HELL,
    I don’t know the basis for your opinion that “the vast majority of voters are healthy.” Neither do I know where you come up with your statement that “EHR won’t work because the individual really does not want it and no one want to directly pay for it.” All the studies I’ve read say just the opposite.
    Your patients may be the exception but most patients want and do need their medical records. 52% of patients over 65 have two chronic illnesses, including 25% who have four. They certainly want their records available to any care provider they see to ensure they receive the correct care — and many of them even carry notebooks, folders and/or boxes of their records to their care providers for this purpose.
    And every mom will tell you they need their children’s meds, allergies and immunizations when enrolling them in school or camp. Similarly, most every pediatrician will tell you that 50% of their new patients arrive without copies of their medical records — which the new pediatricians consider very important to have.
    And most seriously ill patients — irrespective of age — want their records to give to their care providers to ensure they get informed care.
    And virtually every study of consumer attitudes towards their personal health records concludes that a large percentage want to own and control their records, and a goodly percentage will pay to get them.
    Indeed, these same studies clearly establish that patients don’t want their medical records stored on web servers or available over the Internet.
    Thus, the issue is not to ignore bona fide patient wishes to have copies of their records. The challenge is how to do so without storing them on web servers or making them accessible via the Internet.
    Notwithstanding the momentum driving the adoption and use of RHIOs, HIEs, an NHIN, Medical Record Banks, and insurer claims databases, none of these alternatives accomplish what most patients want. Similarly, they don’t meet the needs of physicians either. Yet legacy vendors, non-profit healthcare orgs, consultants, and many government agencies all continue to push for them anyway — ignoring the wishes of the two groups who have real needs that should be met, namely, patients and providers! Go figure!
    There is at least one simple solution to this dilemma/problem, of course. It is the MedKaz™, the portable personal health record system we are developing. I’m sure there are others. We meet the needs of patients, care providers and the public, and do so simply, cheaply with a system that is easy to use and is financially self-sustaining — but I’ll stop with the commercial!

  11. I agree with most of David Kibbe’s post.
    What I don’t agree with is the associated rhethoric, namely that health info easily accessed by patients is a “basic” of health care. This is hyperbole that makes the entrepreneurs in the field drool.
    “Basics” for me is a lot in health care, such as reasonable access, good doctor patient communication etc. Let’s not forget that most developped countries, most with health care outcomes superior to the US, don’t have electronic health data devices/access. So why would this be a basic need?
    Having worked as a physician in different countries, the reasons for fragmentation of care and reuplication of tests in the US are:
    -increased mobility of the US population
    -tendency of many US patients to disrupt continuity of carfe (doctorshopping, own research/secondguessing, for good reasons or not, use of ER and urgent care)
    -defensive medicine
    While I agree that accessibility of health data is very helpful, let’s not overemphasize the issue and let’s not forget to address the latter two issues).

  12. MD as HELL, most people are healthy most of the time, but the vast majority, if not all people, is sick at some point in time.
    Besides, you don’t have to be sick to want your records. When you switch pediatricians, you usually want the records transferred, particularly immunizations.

  13. There are two separate concerns here, well, maybe three.
    CCR can hold and convey a minimum set of data to allow another provider visibility into the patient medical record and hopefully make better informed treatment decisions. And yes, Randy, it includes immunizations :-).
    CCR is not the entire medical record (imaging results, dictated or faxed documents, etc) that one finds in a typical chart. I believe Bev, that was the sort of record Paul Levy was discussing, even though, a good CCR would have probably helped too.
    The third concern, which Dr. Seebode raises is the ability of patients to understand and meaningfully contribute to their medical records. Some can, most cannot, so the patient is only the conduit for information transferred between providers, whether by giving permission to electronic transfer or physically carrying the records.
    Yes, the CCR is not complete, and yes, most patients cannot make personal use of it, but the ability to move an updated CCR between providers is a huge step forward and I completely agree with David that we must start somewhere, so why not start with something simple and meaningful at the same time.

  14. We are going around again. There is no way people are going to share their intimate secrets, which are vital to really caring for them in the context of their lives, when they are going to appear on UTube or be on the watch list of some federal healthy choices committee.
    No one really wants this except overbearing control freaks who are carrying the water for the Obama machine.
    The iphone works because the individual wants it and will pay for it. EHR won’t work because the individual really does not want it and no one want to directly pay for it.
    You obviously are spending too much time thinking like a sick patient. The vast majority of voters are healthy.

  15. See this post on Paul Levy’s blog for a reminder of what happens when care givers forget that the medical record is for the PATIENT, not for their own economic benefit:
    Continuity of care did not seem to be of any concern here. It’s not only how to do it, it’s the recognition that, for the patient’s sake, it must be done.

  16. The growing interest and support for the CCR standard is another glimmer of hope that we are finally on the path to more of a patient-centric, rather than an industry-centric view of health information. Bravo and keep up the good work!

  17. I strongly support the Continuity of Care Record as a standard for PHRs. You are right, the large medical centers which have PHRs with clinical data (not claims data) are a minority. As you say, the problem is not technical, too much care is delivered by solo or small practices which either don’t have EMRs or they are not interoperable. In fact, many still rely on fax to transfer information to other providers. If we see more movement to integrated group practice models, we will not only see better potential for PHRs using the CCR but will also provide better continuity of medical care to patients.

  18. Bravo, David. I couldn’t agree more. I only have two issues with your post.
    First, we can provide a far more comprehensive electronic patient medical record than a CCR, and we can do it today. We need not wait for technological changes or government subsidies to kick in.
    Second, we can do it without forcing physicians, hospitals and other care providers to act against their own economic self interest.
    Our MedKaz™ System puts a patient’s complete lifetime health record in the patient’s hands, and when the patient gives it to his/her care provider, in the hands of the care provider when and where they need it. And we’ll do so starting in 2010!

  19. Please, please, please, please remember the most significant medical health intervention of our times: immunization. Please.
    Accurate, available immunization records can: improve vaccination rates; ease administrative burdens on institutions, families and clinics; and decrease waste and avoidable morbidity and mortality.
    Pediatrics: always #6 on the Top 5 list … 😉