Health records exchange: Many standards, many doubts

Interoperability seems to be everyone's goal, resulting in competing approaches that may not achieve true data sharing

This year's Health Information and Management Systems Society's HIMSS 2013 conference began with a shocker: The announcement that five leading electronic health record (EHR) vendors were forming a group called the CommonWell Health Alliance that would promote "seamless interoperability" of health care data.

HIMSS 2013 also saw the announcement of The Cure Project, an interoperability initiative started by New Health Networks to put to task the health care community, not vendors or the federal government, to help define interoperability standards for health care applications that capture, update, report and exchange information.

[ InfoWorld's Galen Gruman explains why health information exchange is such a tough effort. | Get the latest insight on the tech news that matters from InfoWorld's Tech Watch blog. ]
Slideshow: 13 health care IT trends and predictions for 2013.

There's also the ImPatient Movement, an effort from NoMoreClipboard.com, Microsoft HealthVault, and Indiana Health Information Technology to encourage patients to use an interoperable personal health record (PHR) and encourage providers to use the data in that PHR to improve care.

With a lack of interoperability standing as an obstacle to improving patient care -- and reducing the estimated $750 billion in annual unnecessary health care spending in the United States -- will parallel interoperability initiatives help or hurt the industry?

Vendor interoperability pledge met with skepticism
Although industry observers noted that an EHR vendor interoperability pledge is better than no interoperability at all, reaction to the CommonWell announcement was, in a word, skeptical. (It didn't help that Epic Systems, arguably the EHR market leader, is not part of CommonWell.)

  • The federal Office of the National Coordinator for Health IT (ONC), the Health and Human Services Dept. agency charged with implementing Obamacare, questioned the CommonWell effort's approach and likelihood of promoting true interoperability.
  • Consultant and blogger Anne Zieger referred to it as an interoperability scheme, though she admitted, "the more data sharing the better, particularly by major players with significant market share."
  • Dr. Adrian Gropper, CTO of Patient Privacy Rights, called it a shame and a missed opportunity -- a shame because "another program with opaque governance by the largest incumbents in health IT is being passed off as progress" and a missed opportunity because it doesn't involve physicians or patients.
  • Dan Munro, founder and CEO of iPatient, expressed concern that publicly traded companies -- with boards of directors and shareholders to please and quarterly objectives to meet -- "don't make good candidates for lean, rapid and disruptive technical innovation."
  • Jon Mertz, vice president of marketing for Corepoint Health, put it simply when he asked, "What took so long?"

That's why the men behind the Cure Project -- Dr. Steven E. Waldren, a senior strategist at the American Academy of Family Physicians, and Robert L. Brown, vice president of professional services atMosaica Partners -- say interoperability will come only with what Brown describes as a "large-scale specifications development project."

Back in 2004, President George W. Bush called for widespread adoption of electronic health records. Rather than take the opportunity to recast the EHR system in the context of interacting with patients at the point of care, to make EHR less obtrusive and more efficient, the industry instead went full steam ahead, building hundreds of standalone systems the create and maintain EHRs, Brown says.

As a result, first vendors and then the federal government, through the Meaningful Use program, have defined what they want in health care IT systems -- while providers, the ones actually paying for the systems, haven't had a say. It's time for that to change.

The Cure Project approach: Define the software capabilities you need
The Cure Project began as an "academic exercise" for the Agency for Healthcare Research and Quality that examined information models in the patient-centered medical home (PCMH), one of the cost-saving initiatives included in the Obamacare health care reform. Brown and Waldren had to define that information model, as there was no standard approach, and soon discerned that the model was missing nearly everywhere else, too.

Traditionally, health care IT systems have been designed in an iterative manner that focused on business process automation -- namely, billing and documentation -- and not care delivery. Now that government incentives encourage improved care, through the adoption of the PCMH and the accountable care organization (ACO), there are financial reasons to improve clinical applications, Waldren notes.

For this to happen, the industry needs to define the capabilities it needs, the software functionality that will make it happen and the common, open technical specifications -- not the "insular and problematic and very proprietary" ones Brown says EHR vendors have used for so long -- that can deliver these features. "If we don't specify what we need to do as these new types of [health care] delivery models, or existing delivery models, we can't expect to get a usable, interoperable IT system to support them," Waldren says.

The Cure Project is taking a grassroots approach to defining these capabilities and functionality; its parent company, New Health Networks, will license the output via Creative Commons, and once that work is finished the Cure Project will turn the work over to an entity the community deems best suited to manage and oversee the specifications.

A grassroots approach is necessary because those definitions need to be specific. For example, Waldren points out, health care leaders say they want "population management" capabilities, but that's far too vague to build specs around.

The community needs to decide what patient care quality measures need to appear in a dashboard, what evidence can be brought in to change an individual patient's care plan and, on a broader level, what data will be used to determine which patients are at the highest risk of, say, developing diabetes. If that doesn't happen, he says, the emerging EHR backlash will only worsen.

EHR interoperability struggles of VA, DoD point to management woes
Few scenarios better illustrates the difficulty of interoperability, and the source of that backlash, than the 15-year effort of the Veterans Affairs and Defense departments to get their EHR systems to talk to each other.

The departments represent two of the largest health care systems in the United States and are two of the earliest adopters of EHR technology: VistA, launched in 1978, helps the VA treats 6.3 million veterans, while the DOD's AHLTA, which debuted in 1997, holds records for 9.6 million active-duty service members.

Since the late 1990s, both Congress and the president have urged the departments to achieve varying measures of EHR interoperability. Planning has been absent virtually every step of the way, Valerie C. Melvin, director of information management and technology resources issues for the Government Accountability Office, testified before the U.S. House of Representatives Committee on Veterans' Affairs.

The testimony came after the VA and DoD first said they would abandon the effort to develop a joint EHR by 2017 and then backtracked, saying they were committed to integrated EHR systems rather than a shared system. (They've hired Harris Healthcare Solutions to build a common backbone, EHR interchange format, and common APIs to enable data exchange betwene te two systems.)

Melvin cited several examples:

  • The 1998 Government Computer-Based Patient Record project to give each department an interface into the other's EHR suffered, as "basic principles of sound IT project planning, development and oversight" weren't followed and "accountability ... was blurred across several management entities." The project was finished in 2005.
  • A joint clinical health data repository, slated for completion in October 2005, was nearly one year late. This initiative, GAO said, lacked a project management plan and an architecture for describing the common interface.
  • Although a directive to develop six specific "fully interoperable [EHR] systems or capabilities" by Sept. 30, 2009, was met, the GAO saw none of the "objective, quantifiable, and measurable performance goals and measures that are characteristic of effective planning." These were developed seven months after the functionality was in place.
  • The Virtual Lifetime Electronic Record, a way to streamline how patient records move with a soldier who leaves active duty, began with successful pilot programs. However, without "identifying the target set of capabilities that they intended to demonstrate in the pilot projects and then implement on a nationwide basis," the VLER couldn't meet its goal of implementation at all domestic VA and DoD sites by 2013.
  • Lack of planning for an integrated, jointly funded federal health care center left the VA and DoD unable to "estimate the project cost or establish a baseline schedule." The total cost ballooned to $122 million -- not including the workarounds resulting from delays in setting up single sign-on, single patient registration, and physician order portability.
  • Finally, the fate of the interoperable EHR remains in doubt, the GAO said, and "the extent to which the departments' revised approach to iEHR is guided by a joint health architecture remains to be seen." This in spite of a February 2011 GAO report that recommended putting EHR modernization efforts and IT investments in the context of common health care business needs.

These myriad initiatives, Melvin concluded, suffered from a "persistent absence of clearly defined, measurable goals and metrics" and "deficiencies in key IT management areas of strategic planning, enterprise architecture and investment management."

Federal government seeks interoperability input
Interoperability, then, remains the biggest hurdle to efficient and effective use of health care IT. That's why Dr. Doug Fridsma, the director of the Office of Standards and Interoperability and the acting chief scientist at the ONC, says health IT interoperability is like designing a city.

Linking the disparate clinical, billing, administrative, and email systems in use at the nation's medical centers, hospitals, and independent practices isn't about individual building blueprints, Fridsma says. Because those organizations are, in effect, individual neighborhoods, it's about "zoning laws, roads and infrastructure, rules and governance, and safety and protection," all of which must be implemented according to flexible standards that change incrementally (not radically) and emphasize usability and workflow.

To help build this city, during HIMSS 2013, the ONC released a request for information seeking ways to catalyze interoperability. Various government mandates, ranging from the meaningful use of EHR technology to the care coordination advocated in health care reform, depend on better health information exchange. Several avenues could be pursued, ONC notes, including Medicare, Medicaid, and Children's Health Insurance Program pilot programs and an expansion of the popular Blue Button program.

With interoperability alliances, movements and projects emerging with increasing frequency, the ONC should be prepared to do some heavy reading -- and, it is hoped, give the industry the guidance it needs to make data exchange easier.

Brian Eastwood is a senior editor for CIO.com. You can reach him on Twitter @Brian_Eastwood or via email. Follow everything from CIO.com on Twitter @CIOonline, Facebook, Google + and LinkedIn.

This story, "Health records exchange: Many standards, many doubts" was originally published by CIO.

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