Open Health Round-Up For 2014: Notable Articles, Reports, And Events

Even the hidebound field of health care can undergo a lot of change over the course of one year. Key health IT trends that I saw throughout 2014 are summarized in another article. Here I'll list some of the most notable articles and reports related to open source, standards, and transparency in health.Andy Oram

Changes of direction in the Office of the National Coordinator and Meaningful Use

The ONC, the central mover in health IT, was hit this year by multiple staff changes at the top, a major reorganization, and (in the contentious Congressional end-of-the-year budget bill) level funding that effectively results in cutbacks. Dr. Karen de Salvo, who started as National Coordinator on January 13, was drawn away to work on the Ebola epidemic by October. On top of Kathleen Sebelius's resignation as head of Health and Human Services in April, the changes portend a very different agency from the one that led the charge for the HITECH act and Meaningful Use from 2009 onward.

Dr. John Halamka, who has a hand in nearly every health IT reform or standards work coming out of Washington, started the year with advice to the new national coordinator, and then offered a sense of optimism, along with a list of tasks, for the upcoming year. After ONC's retrenchment, Halamka laid out his assessment of its impact on the field.

Problems with Stage 2 of Meaningful Use popped up in the trade press as early as August. We were even warned by a study back in January that only 13% of doctors hoping to attest to Stage 2 actually had EHRs capable of doing so. Toward the end of 2014, when the lack of attestations to Stage 2 became glaring, numerous critiques of the MU program appeared, their tone alternating between finger-wagging and hand-wringing.

Interoperability and data exchange

The most heavy-weight study this year on the topic of health data exchange was a testing effort by standards experts, reviewed by Brian Ahier and another posting of my own. The experts examined the state of data exchange between health records--using the C-CDA in particular--and found a sorry situation.

Keith Boone (Motorcycle Guy), who helps to shape numerous standards as an employee of GE Healthcare, discussed a minor barrier to interoperability caused by an upgrade to the C-CDA, the most popular format by far for exchanging patient data between providers, despite its limitations and ambiguities.

Two articles in iHealthBeat (reprinted in Open Health News) investigate implementation of Direct and DirectTrust among vendors, finding that they prefer private, proprietary agreements or undermine and incorrectly implement standards.

Lygeia Ricciardi, former director of the Office of Consumer eHealth at ONC, announced the Blue Button Connector to link up individuals with their health care records in February. FHIR, the first standard developed by HL7 that holds promise to meet the needs of modern computing, took several strides forward this year. Embraced by the JASON team (which I'll look at in a later section) and the ONC, it gave off the sense of being real when major vendors pledged support through the Argonaut project. FHIR project leader Grahame Grieve detailed the impact of Project Argonaut for the community in a post in Open Health News. Halamka announced the project and then covered its purpose and scope. Geisinger uses FHIR, along with the standard SHARP API, and will offer its tools to other providers.

Many articles directed their fire at Epic (a favorite target of health reformers due to its size and runaway growth) for refusing to exchange data with competitors. Yet some observers believe EPIC is leading the way on interoperability. KLAS rated EPIC as the top vendor for interoperability, which sounds fishy. Perhaps KLAS said, along with King Lear, "Not being the worst stands in some rank of praise."

It is worth pointing to an article from Quebec showing that their stuggles with interoperability were equally as frustrating as those in the United States. This issue was also the central Topic at a German conference. In part of her revelatory "Eyes Wide Shut" series, IT expert Mandi Bishop laid out steps to ensure a smoother path toward certification for interoperability and Meaningful Use. A major piece by ex-CMIO Chuck Webster pinpoints the need for better approaches to data exchange by what he calls "pragmatic interoperability," which is essentially getting the software on each side to understand the workflow and needs of the other side.

Accountable Care Organizations

ACOs are a snapshot of the US's current, tentative experiment with data sharing and fee-for-value. A number of articles pointed out that ACOs' health IT capabilities remain rudimentary, which will hinder them from reaching the lofty goals set by the Centers for Medicare & Medicaid. ACOs generally are not saving money.

A long article looks at why so many Pioneer ACOs (the first ones signed up by CMS) dropped out of the program, suggesting that payment structures may not reflect reality, and that patients may incur high costs by going outside the ACO. The latter problem was highlighted back in May when an insurer withdrew support from a large number of ACOs, and was predicted by a JAMA article (content available only to subscribers). Oddly, organizations that concentrated on the most costly patients did all right.

Despite disappointing results from early ACOs, CMS has added 89 new ones, reaching a total of 405 ACOs who will participate in the 2015 program. As noted by Ahier, ACOs will be required to demonstrate the use of health IT, although the criteria don't seem particularly strong.

The JASON team

An odd report popped out from Agency for Healthcare Research and Quality in April. A Robust Health Data Infrastructure affirmed the major reforms that IT experts have been clamoring for over the years, along with suggesting an "architecture" that reformulates EHRs as platforms for a third-party marketplace of applications. I have never found out who assembled this report's authors, known collectively as JASON, although the Mitre Corporation hosted the meetings that produced the report. JASON came out with a in November, this time offering wasy to bring individuals' patient-generated data into the system.

A long article by Dr. Robert Rowley nicely laid out the "EHR as platform" approach that was the focus of the JASON reports.

Advances in open source EHRs

There where significant news and advances in 2014 for open source EHRs. So many, in fact, that they require their own review article. Here we focus on the significant advances to the VistA EHR developed by the U.S. Department of Veterans Affairs (VA). VistA is the backbone EHR for the VA as well as the Indian Health Service (IHS) and the Military Health System (MHS). At the end of 2014, Department of Defense launched an $11 billion procurement to replace their EHR system. PricewaterhouseCooper (PwC) bid an open source solution based on VistA as detailed in this article.

Dan Garrett, PwC’s head of Health IT practice, argued that their VistA solution is a logical short-term solution because of existing interoperability between DOD and VA, and provides a sensible long term commitment because the open architecture of VistA provides the opportunity for the DOD to modernize at its own pace. Garrett explains in a Federal Computer Week article, “[VistA] was already funded and supported by U.S. tax dollars. It has the workflow that you need to support the federal sector side. It's not a system that was developed for billing and reverse engineered into an EHR system.” Garret provides more a more in-depth overview of their open source/open architecture solution in this article.

The PwC team includes the leading VistA commercial solution providers and their bid was officially announced during the third annual OSEHRA Open Source Summit held September 3-5 in Bethesda, Maryland. Roger Maduro covers the Summit in great detail in an article titled “OSEHRA Summit Shows the Future for Open Source EHR's— US Government IT Procurement.”

The Summit was attended by a large number of participants from the VA and IHS as well as the open source community in general, including Jim Whitehurst, President and CEO of Red Hat, Doug Fridsma, M.D., Ph.D., Chief Science Officer and Director of the ONC's Office of Science and Technology; and Dan Morhaim, M.D., emergency room physician and member of the Maryland House of Delegates. VA CIO Stephen Warren gave a detailed presentation on the VA’s open source strategy and was part of a panel with the other keynote speakers addressing questions from the audience.

Dr. Morhaim’s presentation centered on the lack of usability of proprietary EHRs which represents a serious obstacle for physicians and nurses trying to provide medical care to patients. He wrote a sobering piece in the Washington Post on this problem. Morhaim proposed rolling out VistA nationally as a solution, an idea shared a large numbers of physicians who voted VistA the #1 EHR in the Medscape EHR Report 2014 as detailed in this article by Edmund Billings. Additional details on the growth of OSEHRA and the VistA EHR Community can be found in this in-depth report by Dr. Seong K. Mun, President and CEO of OSEHRA.

Meanwhile, the dire fruits reaped from the use of proprietary EHRs came through in the sad story of a billing dispute that led to the complete blockage of patient data in Maine. In a way, it was a case of "you can't cheat an honest man." The health care provider thought they could monopolize their patients' data and keep it in their silo, but got cheated at their own game.

Consumer access to information

KQED, a leading public radio station in the San Francisco Bay area,
put up a posting about their PriceCheck service, which accumulates data about the
wildly varying costs of common medical procedures through crowdsourcing. The real hero (or at least the engine) behind PriceCheck is New York-based Clear Health Costs. But as I mention in another article, the site does not collect any data that could point to quality of outcomes (which would be a thorny task).

There's no dearth of evidence that publicizing costs and quality information can save money. One study shows that labs and imagining cost less for people using Castlight Health's service. Wisconsin offers a database of chargemaster prices, showing large variations (of course), while Massachusetts became the first state to require providers to post their prices (with notable loopholes).

"Might Casey" Quinlan produced an interesting report on the Summer Institute for Informed Patient Choice, which looks at a key area of transparency in health care. Dr. Bonnie Feldman produced a look at why patients go online. Another posting suggested that we don't have to fight a battle for patient engagement because they already care--it's the providers who put barriers in the way to communication and empowerment.

Neil Versel produced a useful look at why patient health records (PHRs) have been unsuccessful, and how to fix them. In his view, existing PHRs weren't designed with the interests of patients in mind.

Reports and studies

For sheer size and scope, if nothing else, I think I can justly claim to have produced the major report of 2014 on health IT, The Information Technology Fix for Health: Barriers and Pathways to the Use of Information Technology for Better Health Care. The report looks at all the major themes in the field, such as devices and sensors, electronic records, public data, clinical research, coordinated care, telehealth, and patient empowerment. I believe it to be the first report on this topic to tie the technologies together and show their interdependencies.

The most far-reaching report, though, was ONC's ten-year plan, "Connecting Health and Care for the Nation: a 10-Year Vision to Achieve an Interoperable Health IT Infrastructure," which I have reviewed. A long look toward the future is appropriate for an organization in flux. They didn't say whether they hope the nation's doctors will all attest to Stage 2 by then.

The ONC also released its Federal health IT strategic plan, 2015-2020, and a report on patient identification and matching, which struggled to adapt to an environment in which providers have been legally prevented from creating a universal identifier.

Other interesting developments

Few health IT incidents--certainly, none of the many massive breaches in security that occurred over the year--produced such an outcry as Medicare's release of payment information on individual doctors. Many factors skewed the information, but savvy analysts could still find much of value.

Researchers are tentatively adopting a Beacon standard for sharing the DNA of patients.

Meanwhile, a detailed report on a Tamiflu scandal showed why all clinical trial studies need to be public. Companies routinely suppress results that reveal their drugs to be ineffective or even harmful.

Tom Price, MD, now a Republican member of Congress, called for interoperability as well as for patient control over records.

To concentrate on openness and transparency in this article, I have left out many interesting but unrelated events in health IT, such as report released by the FDA and HHS on regulating software, the miraculous resurrection of Healthcare.gov, the spread of telehealth, and the scheduling scandal at the Department of Veterans Affairs. Some important developments, such as Apple's release of HealthKit and the appearance of competing products from Google and other companies, had an ambiguous impact on the value of openness.

Finally, there were non-events that garnered much news. I come down on the side of those who don't blame an EHR for causing an Ebola diagnosis to be missed in Dallas. And Karen DeSalvo did not leave the ONC when she took her Ebola assignment.

Another interesting summary of progress on open source projects in health care has been published by Opensource.com.

[Update 12/31/2014] Section on open source EHRs was expanded.