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

By DAVID KIBBE

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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corebenefits108DAYSGary O.rbarMargalit Gur-Arie Recent comment authors
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corebenefits
Guest

Nice post. I love it because of its very broad explanation about CCR. You might want to check our link http://corebenefits.bizbuzzweekly.com/

Merle Bushkin
Guest

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… Read more »

MD as HELL
Guest
MD as HELL

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

MD as HELL
Guest
MD as HELL

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.

108DAYS
Guest

“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” Electronic or not, I wonder if this actually has any merit as the basis for a lawsuit. Any lawyers out there?

Merle Bushkin
Guest

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.

MD as HELL
Guest
MD as HELL

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.

Gary O.
Guest
Gary O.

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… Read more »

Margalit Gur-Arie
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Margalit Gur-Arie

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… Read more »

bev M.D.
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bev M.D.

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

bev M.D.
Guest
bev M.D.

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.

Merle Bushkin
Guest

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… Read more »

rbar
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rbar

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… Read more »

Margalit Gur-Arie
Guest
Margalit Gur-Arie

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.

Margalit Gur-Arie
Guest
Margalit Gur-Arie

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… Read more »