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.