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Providers Still Have Hope For HIEs

Posted on July 10, 2015 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

Sometimes, interoperability alone doesn’t cut it.  Increasingly, providers are expecting HIEs to go beyond linking up different organizations to delivering “actionable” data, according to a new report from NORC at the University of Chicago. The intriguing follow-on to the researchers’ conclusions is that HIEs aren’t obsolete, though their obsolescence seemed all but certain in the past.

The study, which was written up by Healthcare Informatics, conducted a series of site visits and 37 discussions with providers in Iowa, Mississippi, New Hampshire, Vermont, Utah and Wyoming. The researchers, who conducted their study in early 2014, hoped to understand how providers looked at HIEs generally and their state HIE program specifically. (The research was funded by ONC.)

One major lesson for the health IT types reading this article is that providers want data sharing models to reflect new care realities.  With Meaningful Use requirements and changes in payment models bearing down on providers, and triggering changes in how care is delivered, health IT-enabled data exchange needs to support new models of care.

According to the study, providers are intent on having HIEs deliver admission, discharge, and transfer alerts, interstate data exchange and data services that assist in coordinating care. While I don’t have comprehensive HIE services research to hand, maybe you do, readers. Are HIEs typically meeting these criteria? I doubt it, though I could be wrong.

That being said, providers seem to be willing to pay for HIE services if the vendor can meet their more stringent criteria.  While this may be tough to swallow for existing HIE technology sellers, it’s good news for the HIE model generally, as getting providers to pay for any form of community data exchange has been somewhat difficult historically.

Some of the biggest challenges in managing HIE connectivity identified by the study include getting good support from both HIE and EMR vendors, as well as a lack of internal staff qualified to manage data exchange, competing priorities and problems managing multiple funding streams. But vendors can work to overcome at least some of these problems.

As I noted previously, hospitals in particular have had many beliefs which have discouraged them from participating in HIEs. As one HIE leader quoted in my previous post noted, many have assumed that HIE connection costs would be in the same range as EMR adoption expenses; they’re been afraid that HIEs would not put strong enough data security in place to meet HIPAA obligations; and they assumed that HIE participation wasn’t that important.

Today, given the growing importance of sophisticated data management has come to the forefront, and most providers know that they need to have the big picture widespread data sharing can provide. Without the comprehensive data set cutting across the patient care environment — something few organizations are integrated enough to develop on their own — they’re unlikely to mount a successful population health management initiative or control costs sufficiently. So it’s interesting to see providers see a future for HIEs.

Patients Can Squawk, But We Have Little To Crow About Open Data

Posted on June 15, 2015 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://radar.oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

One of the biggest disappointments at this year’s Health Datapalooza (which I found disappointing overall) was the continued impasse presented to patients who, bolstered by the best thinking in health care as well as Federal laws and regulations, ask for health data stored about them by doctors and other institutions.

Activists such as Regina Holliday and e-Patient Dave proved years ago that giving patients information and involving them in decisions will save lives. The Society for Participatory Medicine enshrines the principle. But the best witnesses for patient empowerment are the thousands of anonymous patients, spouses, parents, and children quietly trundling folders with their own records through the halls of hospitals, building up more knowledge of their chronic conditions than any professional clinician possesses, and calmly but inflexibly insisting on being equal partners with those who treat them.

There were plenty of high-minded words at the Datapalooza about patient rights to data. It was recognized as a key element of patient empowerment (or “activation,” as the more timid speakers liked to say) as well as an aid to better care. An online petition backed by an impressive array of health reformers is collecting signatures (whom someone will presumably look at) and encourages activists to speak up about this topic on July 4. HHS announced that anyone denied access to data to which the law gives her a right can submit an informal report to noinformationblocking@cms.hhs.gov.

Although occasional mention was made of personal health records (PHRs), most of the constant discussion about interoperability stayed on the safe topic of provider-to-provider data exchange. Keeping data with health care providers leads to all sorts of contorted practices. For instance, patient matching and obtaining consent are some of the most difficult challenges facing health IT in the U.S., all caused by keeping data with providers instead of the patients themselves.

The industry’s slowness to appreciate patient-generated data is also frustrating. Certainly, the health IT field needs to do a lot more to prepare data for use: consumer device manufacturers must assure clinicians of the devices’ accuracy, and researchers need to provide useful analytics that clinicians can plug in to their electronic systems. Still, doctors are demonstrating a disappointing lack of creativity in the face of this revolutionary source of information. It’s all to easy to carp about accuracy (after all, lab tests have limited accuracy as well) or just to state that you don’t know what to do with the data.

I heard about recent progress at the UK’s National Health Service from Brian Ahier, who is the only person I know who can explain the nuances of extensions to FHIR resources while actively using both his laptop and his cell phone at the same time. Ahier heard at a UK-US Bootcamp before the Datapalooza that the NHS has given 97% of its patients access to their records.

But there’s a bit of a caution around that statistic: only one-fifth of the patients have taken advantage of this right. This doesn’t bother me. First of all, one-fifth of the population with access to their personal records would be a dizzying accomplishment for most countries, including the U.S. Second, few people need access to records until some major problem arises, such as the need to see a specialist. They probably feel relieved to know the records will be there when needed.

Another aspect of patient control over data is research. The standard researcher-centered model is seen as increasingly paternalistic, driving patients away. They’re not impressed with being told that some study will benefit people like them–they want to tell researchers what really matters to them as sufferers, and hear more about the study as it goes along. Researchers are frantic to reverse a situation where most studies fail simply because they can’t sign up enough subjects.

The Patient-Centered Outcomes Research Institute (PCORI) is one of the progressive institutions in health care who understand that giving patients more of a say will be increasingly important for signing up patients in the first place, as well doing research of value to them. Its PCORnet combines traditional research databases with databases maintained by patient advocacy groups. Each member network can create its own policies for getting consent, which allows researchers to bend with the needs of their research subjects.

OpenClinica, the open source clinical research platform, just announced the release of an app that may contribute to the goals of taking input from patients and binding them closer to the research endeavor.

Public health officials also recognize the sensibilities of the people they monitor. At a panel on data about low-income people, speakers stressed the importance of collecting data in a respectful way that doesn’t make people feel they’re being spied on or could be punished for their behavior.

Let’s talk a minute about health care costs, if only because doctors and insurers don’t want to. (Some doctors are prohibited by their employers from telling patients how much a recommended procedure will cost, supposedly because they don’t want costs to intrude on what should ideally be a clinical decision. This is changing with the increase in deductibles, but often the doctors don’t even know what the final cost will be after insurance.)

One app so admired by the Datapalooza team that they allowed the company to demonstrate its product on the main stage during keynote time was Sensentia. This product everybody is so impressed with takes in information from health plans to allow patients as well as the staff at health care providers to quickly find the health plan benefits for a procedure. (I recently covered another company doing similar work with insurance and costs.)

Sensentia is a neat product, I am willing to aver. It accepts natural language queries, crunches the data about health plans and insurers, and returns the actual health plan benefits for a treatment. Of course, I know the cost of flying from Boston to San Francisco after six clicks in my browser, even though the calculations that go into offering me a price are at least as complicated as those run by health plans. One may be shocked to hear that that current phone calls to an insurer cost $3-$10. This is the state of health care–it costs more than five bucks on average for a doctor just to find out how much it will cost to offer his own service.

A panel on patient-generated data reported more barriers than successes in getting doctors to work with data from patient devices and reports from everyday life. Another panel about improving quality measures culminated in the moderator admitting that more patients use Yelp than anything else to choose providers–and that it works pretty well for them.

For me that was the conference’s low point, and a moment of despairing cynicism that doesn’t reflect the mood of the conference or the health care field as a whole. Truly, if Yelp could solve our quality problems, we wouldn’t need a Datapalooza or the richness of data analysis it highlights. But I think reformers need more strategies to leap the hurdles we’re facing and implement the vision we all share.

Taking a New Look at the Lamented Personal Health Record: Flow Health’s Debut

Posted on June 8, 2015 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://radar.oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

After the disappointing lack of adoption suffered by Google Health and Microsoft HealthVault, many observers declared personal health records (PHRs) a non-starter, while others predicted that any progress toward personal control over health data would require a radically new approach.

Several new stabs at a PHR are emerging, of which Flow Health shows several promising traits. The company tries to take advantage of–and boost the benefits of–advances in IT standards and payment models. This article is based on a conversation I had with their general counsel, David Harlow, who is widely recognized as the leading legal expert in health IT and health privacy and who consults with companies in those spaces through the Harlow Group.

Because records are collected by doctors, not patients, the chief hurdle any PHR has to overcome is to persuade the health care providers to relinquish sole control over the records they squirrel away in their local EHR silos. Harlow believes the shift to shared risk and coordinated care is creating the incentive for doctors to share. The Center for Medicare & Medicaid Services is promising to greatly increase the role of pay-for-value, and a number of private insurers have promised to do so as well. In short, Flow Health can make headway if the tangible benefit of learning about a patient’s recent hospital discharge or treating chronic conditions while the patient remains at home start to override the doctor’s perception that she can benefit by keeping the patient’s data away from competitors.

The next challenge is technically obtaining the records. This is facilitated first by the widespread move to electronic records (a legacy of Meaningful Use Stage 1) and the partial standardization of these records in the C-CDA. Flow Health recognizes both the C-CDA and Blue Button, as well as using the Direct protocol to obtain records. Harlow says that FHIR will be supported when the standard settles down.

But none of that is enough to offer Flow Health what the doctors and patients really want, which is a unified health record containing all the information given by different providers. Therefore, like other companies trying to broaden access to patient data, Flow Health must deal with the problem that Dr. Eric Topol recently termed the Tower of EMR Babel. They study each format produced by different popular EHRs (each one using the C-CDA in slightly incompatible ways) and convert the data into a harmonized format. This allows Flow Health to then reconcile records when a diagnosis, a medication list, or some other aspect of the patient’s health is represented differently in different records.

What’s next for Flow Health? Harlow said they are preparing an API to let third parties add powerful functionality, such as care coordination and patient access from any app of their choice. Flow Health is already working closely with payers and providers to address workflow challenges, thus accelerating the aggregation of patient health record data for access and use by clinicians and patients.

A relative of mine could have used something like Flow Health recently when her eye doctor referred her to the prestigious Lahey Clinic in the Boston area. First of all, the test that led to the referral had to be repeated at the Lahey Clinic, because the eye doctor did not forward test results. Nor did anyone provide a medication list, so the Lahey Clinic printed out a five-year old medication list that happened to hang around from a visit long ago and asked her to manually update it. There was also confusion about what her insurer would cover, but that’s a different matter. All this took place in 2015, in the country’s leading region for medical care.

It seems inevitable that–as Flow Health hopes–patients will come to demand access to their medical records. A slew of interesting experiments will proliferate, like Flow Health and the rather different vision of Medyear to treat health information like a social network feed. Patient-generated data, such as the output from fitness devices and home sensors, will put yet more pressure on health care providers to take the patient seriously as a source of information. And I’ll continue to follow developments.

The Dawn of The Community EMR

Posted on May 29, 2015 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

While many healthcare stakeholders would like to see clinical data shared freely, the models we have in place simply can’t get this done.

Take private HIEs, for example. Some of them have been quite successful at fostering data sharing between different parts of a health system, but the higher clinical functions aren’t integrated — just the data.

Another dead end comes when a health system uses a single EMR across its entire line of properties. That may integrate clinical workflow to some degree, but far too often, the different instances of the EMR can’t share data directly.

If healthcare is to transform itself, a new platform will be necessary which can be both the data-sharing and clinical tool needed for every healthcare player in a community. Consider the vision laid out by Forbes contributor Dave Chase:

Just as the previous wars impacted which countries would lead the world in prosperity, the “war” we are in will dictate the communities that get the lion’s share of the jobs (and thus prosperity). Smart economic development directors and mayors will stake their claim to be the place where healthcare gets reinvented.

In Chase’s column, he notes that companies like IBM have begun to base their decisions about where to locate new technology centers partly on how efficiently, effectively and affordably care can be delivered in that community. For example, the tech giant recently decided to locate 4,000 new jobs in Dubuque, Iowa after concluding that the region offered the best value for their healthcare dollar.

To compete with the Dubuques of the world, Chase says, communities will need to pool their existing healthcare spending — ideally $1B or more — and use it to transform how their entire region delivers care.

While Chase doesn’t mention this, one element which will be critical in building smart healthcare communities is an EMR that works as both a workflow and care coordination tool AND a platform for sharing data. I can’t imagine how entire communities can rebuild their care without sharing a single tool like this.

A few years ago I wrote about how the next generation of  EMRs would probably be architected as a platform with a stack of apps built over it that suit individual organizations. The idea doesn’t seem to have gained a lot of traction in the U.S. since 2012, but the approach is very much alive outside the country, with vendors like Australia’s Ocean Informatics selling this type of technology to government entities around the world. And maybe it can bring cities and regions together too.

For the short term, getting a community of providers to go all in on such an architecture doesn’t seem too likely. Instead, they’ll cling to ACO models which offer at least an illusion of independence. But when communities that offer good healthcare value start to steal their patients and corporate customers, they may think again.

Customizable EMRs Are Long Overdue

Posted on May 5, 2015 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

EMRs can be customized to some extent today, but not that much. Providers can create interfaces between their EMR and other platforms, such as PACS or laboratory information systems, but you can’t really take the guts of the thing apart. The reality is that the EMR vendor’s configuration shapes how providers do business, not the other way around.

This has been the state of affairs for so long that you don’t hear too much complaining about it, but health IT execs should really be raising a ruckus. While some hospitals might prefer to have all of their EMR’s major functions locked down before it gets integrated with other systems, others would surely prefer to build out their own EMR from widgetized components on a generic platform.

Actually, a friend recently introduced me to a company which is taking just this approach. Ocean Informatics, which has built an eHealth base on the openEHR platform, offers end users the chance to build not only an EMR application, but also use clinical modules including infection control, care support, decision support and advanced care management, and a mobile platform. It also offers compatible knowledge-based management modules, including clinical modeling tools and a clinical modeling manager.

It’s telling that the New South Wales, Australia-based open source vendor sells directly to governments, including Brazil, Norway and Slovenia. True, U.S. government is obviously responsible for VistA, the VA’s universally beloved open source EMR, but the Department of Defense is currently in the process of picking between Epic and Cerner to implement its $11B EMR update. Even VistA’s backers have thrown it under the bus, in other words.

Given the long-established propensity of commercial vendors to sell a hard-welded product, it seems unlikely that they’re going to switch to a modular design anytime soon.  Epic and Cerner largely sell completely-built cars with a few expensive options. Open source offers a chassis, doors, wheels, a custom interior you can style with alligator skin if you’d like, and plenty of free options, at a price you more or less choose. But it would apparently be too sensible to expect EMR vendors to provide the flexible, affordable option.

That being said, as health systems are increasingly forced to be all things to all people — managers of population health, risk-bearing ACOs, trackers of mobile health data, providers of virtual medicine and more — they’ll be forced to throw their weight behind a more flexible architecture. Buying an EMR “out of the box” simply won’t make sense.

When commercial vendors finally concede to the inevitable and turn out modular eHealth data tools, providers will finally be in a position to handle their new roles efficiently. It’s about time Epic and Cerner vendors got it done!

Epic Belatedly Accepts Reality And Drops Interoperability Fees

Posted on April 21, 2015 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

Unbeknownst to me, and perhaps some of you as well, Epic has been charging customers data usage fees for quite some time.  The EMR giant has been quietly dunning users 20 cents for each clinical message sent to a health information exchange and $2.35 for inbound messages from non-Epic users, fees which could surely mount up into the millions if across a substantial health system.  (The messages were delivered through an EMR module known as Care Everywhere.)

And now, Epic chose #HIMSS15 to announce grandly that it was no longer charging users any fees to share clinical data with organizations that don’t use its technology, at least until 2020, according to CEO Judy Faulkner.  In doing so, it has glossed over the fact that these questionable charges existed in the first place, apparently with some success. For an organization which has historically ducked the press routinely, Epic seems to have its eye on the PR ball.

To me, this announcement is troubling in several ways, including the following:

  • Charging fees of this kind smacks of a shakedown.  If a hospital or health system buys Epic, they can’t exactly back out of their hundreds-of-millions-of-dollars investment to ensure they can share data with outside organizations.
  • Forcing providers to pay fees to share data with non-Epic customers penalizes the customers for interoperability problems for which Epic itself is responsible. It may be legal but it sure ain’t kosher.
  • In a world where even existing Epic customers can’t share freely with other Epic customers, the vendor ought to be reinvesting these interoperability fees in making that happen. I see no signs that this is happening.
  • If Epic consciously makes it costly for health systems to share data, it can impact patient care both within and outside, arguably raising costs and increasing the odds of care mistakes. Doing so consciously seems less than ethical. After all, Epic has a 15% to 20% market share in both the hospital and ambulatory enterprise EMR sector, and any move it makes affects millions of patients.

But Epic’s leadership is unrepentant. In fact, it seems that Epic feels it’s being tremendously generous in letting the fees go.  Here’s Eric Helsher, Epic’s vice president of client success, as told to Becker’s Hospital Review: “We felt the fee was small and, in our opinion, fair and one of the least expensive…but it was confusing to our customers.”

Mr. Helsher, I submit that your customers understood the fees just fine, but balked at paying them — and for good reason. At this point in the history of clinical data networking, pay-as-you-go models make no sense, as they impose a large fluctuating expense on organizations already struggling to manage development and implementation costs.

But those of us, like myself, who stand amazed at the degree to which Epic blithely powers through criticism, may see the giant challenged someday. Members of Congress are beginning to “get it” about interoperability, and Epic is in their sights.

ONC Healthcare Interoperability Roadmap Infographic

Posted on February 5, 2015 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

There’s been a lot of talk around the 10 year ONC Healthcare Interoperability Roadmap. I think it’s a really great thing that they’re helping to drive a lot more discussion around interoperability. I’m very interested in doing the same.

For those who want the cliff notes version of the interoperability roadmap, I think this infographic does a pretty good job summarizing it:
ONC Healthcare Interoperability Roadmap Infographic

What do you think of the roadmap? Is it all conjecture and not much substance or will it make a big difference?

ONC Annual Meeting – Who’s Going?

Posted on January 28, 2015 I Written By

When Carl Bergman isn't rooting for the Washington Nationals or searching for a Steeler bar, he’s Managing Partner of EHRSelector.com, a free service for matching users and EHRs. For the last dozen years, he’s concentrated on EHR consulting and writing. He spent the 80s and 90s as an itinerant project manger doing his small part for the dot com bubble. Prior to that, Bergman served a ten year stretch in the District of Columbia government as a policy and fiscal analyst.

ONC’s Agenda – February 2-3, Washington, DC

Next Monday, ONC holds its annual meeting in downtown DC. I’m going, one small advantage of living here. Here’s the agenda. To see day two, click on the agenda header.

I’m particularly interested in these topics:

  • Adverse event reporting,
  • Interoperability standards,
  • Meaningful Use program’s future, and
  • Usability.

Looking at the agenda, I should stay busy with one exception. There isn’t much on usability. The word’s only on the agenda once. Not a surprise since ONC has pretty much relinquished any role to the vendors.

How important do you think the ONC meeting and also the ONC run Healthdatapalooza now that meaningful use has kind of run its course? Will these two meeting gain steam and influence or will organizations start to go other places? I’ll be interested to watch that trend as I attend the event.

If you can’t attend, you can follow on various webcasts and twitter. If you do plan to attend, I’d love to see you there. To email me, click on my name in my profile blurb, or at carl@ehrselector.com.

The New Congressional Rider: Unique Patient ID Lemonade?

Posted on January 8, 2015 I Written By

When Carl Bergman isn't rooting for the Washington Nationals or searching for a Steeler bar, he’s Managing Partner of EHRSelector.com, a free service for matching users and EHRs. For the last dozen years, he’s concentrated on EHR consulting and writing. He spent the 80s and 90s as an itinerant project manger doing his small part for the dot com bubble. Prior to that, Bergman served a ten year stretch in the District of Columbia government as a policy and fiscal analyst.

Note: Previous versions referred to Rand Paul as the author of the first congressional rider. That was in error. The first rider was authored by then Representative Ron Paul. I regret the error. CB

Last month, I posted that Ron Paul’s gag rule on a national patient identifier was gone. Shortly, thereafter, Brian Ahier noted that the gag rule wasn’t dead. It just used different words. Now, it looks as if we were both right and both wrong. Here’s why. Paul’s rider’s gone, but its replacement, though daunting, isn’t as restrictive.

The gag rules are appropriation bill riders. Paul’s, which began in 1998, was aimed at a HIPAA provision, which called for identifiers for:

…. [E]ach individual, employer, health plan, and health care provider for use in the health care system. 42 US Code Sec. 1320d-2(b)

It prohibited “[P]lanning, testing, piloting, or developing a national identification card.” This was interpreted to prohibit a national patient id.

As I noted in my post, Paul’s language was dropped from the CRomnibus appropriation act. Brian, however, found new, restrictive language in CRomnibus, which says:

Sec. 510. None of the funds made available in this Act may be used to promulgate or adopt any final standard under section 1173(b) of the Social Security Act providing for, or providing for the assignment of, a unique health identifier for an individual (except in an individual’s capacity as an employer or a health care provider), until legislation is enacted specifically approving the standard.

Gag Rule’s Replacement Language

Unlike Paul’s absolutist text, the new rider makes Congress the last, biggest step in a formal ID process. The new language lets ID development go ahead, but if HHS wants to adopt a standard, Congress must approve it.

This change creates two potential adoption paths. Along the first, and most obvious, HHS develops a mandatory, national patient ID through Medicare, or the Meaningful Use program, etc., and asks congress’ approval. This would be a long, hard, uphill fight.

The second is voluntary adoption. For example, NIST could develop a voluntary, industry standard. Until now, Paul’s rider stopped this approach.

NIST’s a Consensus Building Not a Rulemaking Agency

NIST’s potential ID role is well within its non regulatory, consensus standards development mandate. It could lead a patient ID building effort with EHR stakeholders. Given the high cost of current patient matching techniques, stakeholders may well welcome a uniform, voluntary standard. That would not solve all interoperability problems, but it would go a long way toward that end.

Congress has loosened its grip on a patient ID, now its up to ONC, NIST, etc., to use this new freedom.

Assessment Released of Health Information Exchanges (Part 2 of 2)

Posted on January 7, 2015 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://radar.oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

The previous installment of this article talked about the survivability of HIEs, drawing on a report released under ONC auspices. This installment delves into some other interesting aspects of information exchange.

Data Ownership and Privacy Raise Their Heads
Whenever data is a topic, policy issues around ownership and privacy cannot be dismissed. The HIE report does not address them directly, but they peek out from behind questions of how all this stuff gets stored.

Two essential strategies allow data sharing. In the simpler strategy, the HIE vacuums up data from all the providers who join. In a more subtle and supple strategy, known as a federated system, the HIE leaves the data at the providers and just provides connectivity. For instance, the HIE report explains that some HIEs store enough data to identify patients and list the providers who have data on them (this uses a master patient index, which solves the common problem of matching a patient). Once a patient is matched, the HIE retrieves relevant data from each provider.

The advantage of the vacuum suction strategy is that, once an HIE has all the data in one place, it can efficiently run analytics across a humongous data set and deliver the highly desirable analytics and planning that make the HIE attractive to clients. But this strategy brings significant risk as well.

Programmers and administrators in the computer field have long understood the classic problem of copying data: if you keep two or more copies of data, they can get out of sync. The HIE report recognizes this weakness, indicating that HIEs storing patient data can get outdated (p. 12). According to the report, “Stakeholders reported it is very damaging to the reputation of state efforts when provider queries return insufficient results, leading users to conclude the system is not useful.” (p. 17) In fact, some HIEs don’t even know when a patient has died (p. 20).

Another classic problem of copying data is that it forces the HIE to maintain a huge repository, along with enough server power and bandwidth to handle requests. This in turn raises costs and drives away potential clients. Success in such cases can be self-defeating: if you really do offer convenient query facilities and strong analytic power, demands will increase dramatically. Larger facilities, which (as I’ve said) are more attractive to HIEs, will also use data in more highly developed and sophisticated ways, which will lead to more requests banging on the HIE’s door. It’s no whim that Amazon Web Services, the leading cloud offering in the computer field, imposes limits on data transferred, as well as other uses of the system.

Thus the appeal of federated systems. However, they are technically more complex. More significantly, their success or failure rests on standardization more than a vacuum suction strategy. If you have a hundred different providers using a couple dozen different and incompatible EHRs, it’s easier to provide one-way channels that vacuum up EHR data than to upgrade all the EHRs to engage in fine-grained communication. Indeed, incomplete standards were identified as a burden on HIEs (p. 19). Furthermore, data isn’t clean: it’s entered inconsistently by different providers, or in different fields (p. 20). This could be solved by translation facilities.

What intrigues me about the federated approach is that the very possibility of its use puts providers on the defensive over their control of patient data. If an HIE gets a federated system to work, there is little reason to leave data at the provider instead of putting it under the control of the patient. Now that Apple’s HealthKit and similar initiatives put patient health records back on the health care agenda, patient advocates can start pushing for a form of HIE that gives patients back their data.

What Direction for Direct Project?
The Direct project was one of the proudest achievements of the health IT reforms unleashed by the HITECH act. It was open source software developed in a transparent manner, available to all, and designed to use email so even the least technically able health care provider could participate in the program. But Direct may soon become obsolete.

It’s still best for providers without consistent Internet access, but almost anyone with an always-on Internet connection could do better. The HIE report says that in some places, “Direct use is low because providers must access the secure messaging system through a web portal instead of through their EHRs.” (p. 11)

A recent article uncovered the impedances put up by EHR vendors to prevent Direct from working. The HIE report bolstered this assessment (pp. 19-20). As for DirectTrust (also covered by the article’s reporter), even though it was meant to solve connectivity problems, it could turn into yet another silo because it requires providers to sign up and not all do so.

Ideally, health information exchange would disappear quietly into a learning health care system. The ONC-sponsored report shows how far we are from this vision. At the same time, it points to a few ways forward: more engagement with providers (pp. 14, 25), more services that add value to patient care, tighter standards. With some of these advances, the health care field may find the proper architecture and funding model for data exchange.