Anti-info Blocking Crusade in Congress Must be Curbed

It's clear that there's no easy way to share patient health data, but to turn to the last resort of heavy government regulation seems an ill-considered remedy.

Even though there is ample evidence that hospital providers themselves are the biggest source of information blocking, the inability for patients' electronic health records to follow them wherever they receive care, allegation persists that EHR vendors, Epic in particular, are a major part of the problem.

The Office of the National Coordinator for Health Information Technology brought fresh credence to this allegation in its April 2015 report to Congress. "As more fully defined in this report, information blocking occurs when persons or entities knowingly and unreasonably interfere with the exchange or use of electronic health information," the report states.

Should the Feds Fix Interoperability?

"In 2014, ONC received approximately 60 unsolicited reports of potential information blocking. In addition, ONC staff reviewed many additional anecdotes and accounts of potential information blocking found in various public records and testimony, industry analyses, trade and public news media, and other sources," the report says.

It found a wide variation in fees charged by a number of EHR software providers to permit information to flow to and from their EHR software. Perhaps it comes as no coincidence that the same month that ONC issued its report, Epic announced it would waive its transaction fees for information flow, and Cerner announced it would waive similar fees to exchange data through its connections to Commonwell Alliance through the end of 2017.

Recently, I became aware of a new freely available exchange between Epic and Yale-New Haven Hospital, about six months ago. The hospital, which runs Epic, now integrates the Athenanet network with Epic's CareEverywhere record-sharing network.

Implementation is 'Challenging Work'
Today, Yale-New Haven Hospital physicians are able to see Athena-generated CCDs appear in CareEverywhere's list of organizations containing CCDs about the patient in question (albeit listed under "other organizations," rather than "Epic organizations").

"Implementing these large, integrated EMRs and making all the connections is challenging work," says Daniel Barchi, who until Monday was chief information officer at Yale-New Haven Hospital. (Today, Dec 1, is his first day as CIO of NewYork-Presbyterian Hospital, taking the place of retiring CIO, Aurelia Boyer.)

After Yale-New Haven started rolling out the Epic EHR in 2011, "and finally being up on all of our sites and physician practices in 2014, then we turned our attention to this type of interoperability, so it's not a conscious decision not to have done it before this," Barchi says.

He takes issue with a Politico story quoting him as saying that Epic is the de facto health information exchange for the state of Connecticut. In an email he sent me after our conversation, Barchi clarified:

"I said that HIEs have not lived up to their promise and that what we did at Yale New Haven Health was to leverage all of the tools we have available (HIEs, APIs, interfaces, shared access to the EMR, patient portals, and data sharing through the EMR) to share data."

"It's just now that we and other health systems around the nation are getting to this important work. It's because we really believe that the data is the patients', and we are merely stewards of that data, so if you believe that the data is the patient's data, and we're responsible for protecting it and then giving it to the people who need to use it to care for those patients."

Although Barchi does not yet have data on how many records have flowed specifically between Epic and Athena at Yale-New Haven Hospital so far, overall, the hospital has shared 131,000 patient records in the past 12 months, with more than 500 healthcare institutions across the U.S.

Patient Consent Required
"It's also important to reinforce the point that you've made that there is no easy way to share data," Barchi says. "Everywhere that you share data takes work, and it's people who are building interfaces or making the API connections, and then maintaining those. So we all wish that it was easier and more secure. Because it's not, it's upon us to do the work by building these interfaces and making these API and FHIR connections, and then maintaining them and watching to make sure that they're safe and secure."

The patient experience of records which flow slowly (if at all) is also distorted by patients' own lack of understanding that data does not flow unless there is patient consent first. A friend of mine was perturbed recently to learn that in order to get his Epic-based medical records from the Cleveland Clinic to Kaiser Permanente, he had to go not to his doctor, but to Kaiser's medical records department, to sign some consent forms.

The good news is, that once patients sign the consents, and once initial connections are established, as in the case of Athena-Epic, data then continues to flow without further patient consents being required.

Also worth noting is the fact that Epic has already enabled similar sharing with rival EHR brands eClinicalWorks and Greenway Health. It's also interesting to note that Epic and Athenahealth (along with Cerner) garnered top ratings in KLAS' inaugural interoperability report released in October.

I wish I could believe that podium-pounding elected officials in Washington haven't sometimes reduced this issue to a political one, but stories like Yale-New Haven Hospital's, and my friend's, have me believing that this issue sometimes has been over-simplified for political gain.

The danger remains that Congress will insert some sort of blunt instrument into legislation such as the 21st Century Cures Act, putting regulations in place even as the need for such heavy-handed legislation appears to be in question.

I do believe that patients and all providers need to continue to push and challenge each other to understand the underlying issues that made 2015 the Year of Information Blocking and What To Do About It. As I've noted, someone has to pay for health information exchange. In addition, the final shape of the nation's EHR-sharing networks remains more of a rough outline than a clear roadmap.

One final point. Nothing I've said here means we don't have to watch the behavior of players who wield a lot of market making-or-breaking power. That applies to technology players as well as to healthcare players. I hope that the more freely information flows, the more educated patients and physicians alike can become, and the easier it will be to take their business where they wish without interoperability issues being an impediment.

To a certain extent, the standards set forth in meaningful use stage 2, notably the Continuity of Care Document and the Direct messaging protocol, appear to be proving increasingly useful to the soaring amount of sharing now occurring. More needs to be done, but to turn to the last resort of heavy government regulation seems an ill-considered remedy at this point.