An Open Letter on Open Healthcare Data

Screen Shot 2014-08-22 at 9.26.00 AMThis week a host of organizations responded to a Senate Finance Committee request for feedback on how to better use healthcare data.

The inquiry is timely, given the widespread frustration providers have with health information technology (HIT), and electronic health records (EHR) systems in particular. This frustration stems from many HIT/EHR systems are locked in proprietary systems. This hinders technology’s ability to connect and exchange information freely between disparate systems, devices and sensors along the care continuum, thus undermining the overall goal of using HIT to improve efficiencies and reduce costs.

An example illustrates the point. Because HIT systems don’t work together, most hospitals use nurses to manually double check input from disparate “smart” devices. For instance, an infusion pump reports the level of pain medication being administered to a patient, as does the EHR. But these numbers sometimes don’t match, and must be double checked by at least two nurses to confirm the right dosing. Not only is this a step back for efficiency, but it’s also another manual process that has the potential to create errors and patient safety issues.

There are also economic consequences of data fragmentation. According to the Office of the National Coordinator (ONC), U.S. providers are spending $8 billion a year due to the lack of interoperability.

To address this problem and reduce the unnecessary fragmentation of healthcare data, it’s time to require the use of open and secure applications programming interfaces (APIs).

In April, a group of America’s leading scientists, named JASON, published a report that found the current lack of interoperability among HIT data sources is a major impediment to the exchange of health information. They recommended that EHR vendors be required to develop and implement APIs that support health data architecture. The recommendation was also endorsed by the President’s Council of Advisors on Science and Technology (PCAST) in May. Requiring open APIs as a foundational standard for healthcare data would reverse the current legacy of locked systems and enable the real-time exchange of information in EHR systems to reduce costs and improve patient safety.

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Why Direct is a Hit and PCAST is an Outcast

Regular readers know that I find Professor Clay Christen’s theory of disruptive innovation to be a useful lens to explain industry evolution. Let’s look at two recent health IT initiatives and see why one is working and the other is stalled.

Characterizing the Direct Project — why it’s working:

  1. A low-end industry disruption. The Direct Project takes transactions that are routine but inefficient — fax, telephone, mail exchanges between health care providers — and specifies standardized, Internet based technologies to conduct them electronically.
  2. Incremental change — a few specified transactions.
  3. Bottom up — ONC hired a capable project manager (Arien Malec) who choreographed a small team of volunteers working under short deadlines.
  4. Implementing “better, faster, cheaper” technology on the fly (i.e., Internet transactions replace fax, phone).
  5. Under the radar — invoking little response from incumbents. Direct was seen as focusing on transactions that were peripheral to the core EHR.Continue reading…

Realizing Value from Health IT: A BCG Response to the PCAST report

If we are to achieve the aims of health insurance reform/PPACA, let alone eventual health delivery reform, the US needs coherent, comprehensive federal health IT policy.  In late December, PCAST, the President’s Council of Advisors on Science and Technology, issued its perspective on how HITECH has (and hasn’t) moved the needle and where we need to go from here.  PCAST is an influential group.  It is chaired by Eric Lander, President, Broad Institute of Harvard and MIT and John P. Holdren, Assistant to the President for Science and Technology and Director of the Office of Science and Technology Policy.  The council includes heavy hitters from the technology and business worlds including Eric Schmidt, Chairman of Google, Craig Mundie, Chief Research and Strategy Officer of Microsoft, and Christine Cassel, President and CEO of the American Board of Internal Medicine.  PCAST’s report, entitled “Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: The Path Forward” makes several important additions to the health IT policy conversation, but fails to hit the mark in two critical areas.

On the positive side, we agree with PCAST that IT can contribute to lower costs and higher quality in health care, and that current national HCIT programs, while an enormous improvement over the last forty years of neglect and disincentives, are insufficiently radical to fully realize that value.

We agree that separation of data from applications, liberating the data from the proprietary databases and applications that typically imprison it today is core to unleashing the power of healthcare information (think: free-text patient note vs. reportable and trend-able lab results).  Doing so creates value by allowing the right information to be delivered to the right individuals, at the right time, in the right format for the relevant context (e.g. trending of A1c values over time for population health management).   Furthermore, freeing data from specific applications would enable greater innovation than is available today and is critical to certain types of data uses such as population-level research, comparative effectiveness research, and biosurveillance.Continue reading…

PCAST HIT Report Becomes a Political Piñata

The PCAST Report on Health IT has become a political piñata.

Early Feedback on PCAST

Like many of my colleagues, I was taken aback by the release of the Report in early December 2010 — I didn’t know quite what to make of it. Response in the first week of release after Report was:

  • Limited. The first commentaries were primarily by technical and/or clinical bloggers. The mainstream HIT world had remarkably little initial reaction to the Report.
  • Respectful of the imprimatur of “The President’s” Report and noting some of the big names associated with the report (e.g., Google’s Eric Schmidt and Microsoft’s Craig Mundie.)
  • Focused on technical and/or clinical perspectives around two broad themes.
    • The vision is on target:  “extraordinary”, “breathtakingly innovative”.
    • These guys didn’t do all their technical homework. The range varies, but the message is consistent.

Today’s POV on PCAST

What  a difference a six weeks makes.

The Office of the National Coordinator for Health IT (ONC) requested comments on the Report. The comments were due by January 19 and a number of influential organizations have already made their comments public.

After having read 10 early commentaries submitted to ONC, I’ll (admittedly subjectively) divide them into 3 schools of thought:

1) PCAST is a frontal attack on mainstream clinical, technical, and economic stakeholders in existing U.S. health IT. While there are some good ideas in the report, almost all of them are already in the works.  Bury PCAST ASAP.

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Putting the Patient First, Literally

Interoperability is front and center, again. Stage 1 of HITECH was about health records for doctors. Stage 2 is about interoperability. The President’s Council of Advisors on Science and Technology (PCAST) report is all about interoperability. At a recent state medical society meeting, the most animated questions by physicians to Dr. Blumenthal were about the lack of interoperability in electronic health records.

While HITECH is designed to regulate the behavior of technology vendors, it is struggling to encourage doctors to accept the result. Growing interest in ACOs may, at last, drive doctors to demand effective interoperability, and using the patient as a principal or intermediary can jump-start the clinical integration they seek.

For more than 5 years, interoperability has been approached from the perspective of doctors and hospitals. The results speak for themselves. As we process the innovations proposed by PCAST and consider the specifics of Stage 2 regulations, it’s time to put patients first and technology second by giving patients (and their designated agents) convenient access to their health records in their choice of electronic formats including Blue Button, CCR and CDA. Market forces will take care of the rest. Experience with Blue Button and the Direct Project shows that patient-centered and secure, directed exchange avoid the privacy and policy issues that delay technological approaches to interoperability.

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Comment on the PCAST Report

This comment is not in response to the specific questions posed by ONC, which seem to presume a certain validity of the PCAST report. This comment is respectfully raising several basic questions, which in my opinion, the PCAST reports either did not address or circumvented. With this in mind, you may choose to continue reading, or not.

I would like to start by clarifying that I am now, and always have been, a strong proponent and supporter of appropriate computerization of medical records, HIT in general and the resulting opportunities for expanded clinical research. For the purpose of full disclosure, I have no financial or any other, interests in any HIT vendor.

1. Where does clinical data reside today?

  • Providers – As we all know, there are massive amounts of paper based medical records residing within the walls of providers of all shapes and types. In addition to paper based records, there is a significant (and growing) amount of medical records maintained in electronic format by mostly large providers, but smaller ones as well. The vast majority of these records are created and stored in document format (scanned, dictated, typed, annotated, handwritten, transcribed, etc.). A small portion of this data is stored in structured format, mostly if not all, in relational databases. The most common discrete data elements are demographics, insurance details, diagnoses (ICD-9), procedures (CPT), vitals, and here and there lab results, immunizations, medications, some histories and relatively rarely, findings.

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Wanted: A PCAST Patient Portal

What do the President’s Council of Advisors on Science and Technology (PCAST), the recent Institute of Medicine (IOM) report and the New England Journal of Medicine article on value in health care by Porter have in common?

They call for increasing aggregation of information around individual patients even as they seek to avoid complications for and interference with providers.

Even so, the debate between provider-centered and patient-centered health information exchange is still very much with us. Recent progress with the Direct ProjectBlue Button and Kaiser’s donation of terminology suggest a trend toward simplicity and open-source collaboration as essential catalysts for health information exchange.

The next logical step is a PCAST-inspired patient portal.

The essential elements of a PCAST Patient Portal are already available:

  • Blue Button success proves that patients appreciate and will adopt enhanced portal features and that providers can readily connect their databases to the portal if the technical and policy requirements are truly minimal.
  • The Direct Project shows that combined federal and industry support can produce accessible open source code for bidirectional health information exchange in record time.

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