HIE Guide for the Perplexed

HIE stands for Health Information Exchange. Sometimes the term HIE is used to describe the act of exchanging health information, sometimes HIE is used to describe the infrastructure which enables the exchange to occur and sometimes HIE is used to describe an organization that owns the infrastructure which enables the act of health information exchange. HIE (the act) is supposedly the holy grail of Health Information Technology (HIT) and the enabler of “an EHR for every American by 2014”, which in turn, will bring about better health care at lower costs and, by leveling the playing field, will reduce disparities in care.

The Government, through ONC, has awarded over $547 million to various States to create regional HIE (organizations). The fledgling new State HIEs (the organizations) are busy screening and purchasing HIEs (the platforms) and defining the rules of their local HIE (the act). There are several HIE (platform) vendors, notably Medicity and Axolotl (recently acquired by Ingenix), but even Microsoft and IBM are trying to make inroads into this fairly new market. In a parallel process, ONC is busy defining national standards and regulations for HIE (the act).

There are two basic models for any information exchange and HIE (the act) is no different.

The Centralized Model – All information creators/editors/contributors push their content to a centralized repository, preferably in real time, and all users/readers pull the information on demand from said centralized repository. This is the infamous “database in the sky” which houses every American’s medical records. Conceptually, this is the simplest model to understand. The Government will buy enough hardware to set up clusters upon clusters of databases, define the exact data elements and documents to be stored, assign a national identifier to all of us (physicians too) and finally publish specifications for pushing and pulling data securely. Every EHR vendor and medical information supplier (such as labs and pharmacies) will build the necessary web services and integrate them in their technology and we will all live happily ever after. However, other than the obvious monumental technology challenges involved in maintaining such infrastructure, Americans tend to experience significant discomfort with the concept of Uncle Sam having unfettered access to so much personal information and the obvious privacy issues it raises.

The Federated Model – Health information is maintained where it is created, be it physician offices, hospitals or other agencies of care. Contributors push content to users if they want to and readers pull content from contributors when they need to. The best way to think about this is to compare it to telephony. You call me when you need information from me or when you want to share with me information you have, and I do the same. This of course implies that we speak the same language and know each other’s phone number and if we don’t, we have a way to look it up somewhere. It also implies that we both have an agreed upon method of identifying the people we are discussing, e.g. cousin Jamie is my aunt Sarah’s daughter, not your uncle Bernie’s oldest boy. This model requires something akin to White and Yellow pages for providers, as well as unique identifiers for patients, and an agreed upon method to “make phone calls” or push and pull information.

And then, of course, you can have multiple hybrid models, which are somewhat centralized and somewhat federated. The Government funded State HIEs (the platforms) could be regional databases in the sky, or regional telephony networks with associated directories, both serving as federated super nodes on a national network of networks. The advocates of patient controlled medical records would suggest that PHRs should be the basic units of a federated model and nobody gets to gossip about cousin Jamie except cousin Jamie, who at my request will tell you as much as he/she chooses to tell you.

So what are we building out there? We are definitely not building the centralized national database, that’s for sure, but we seem to be engaged in building a little bit of everything else, and we are not starting from scratch.

Pre-HITECH HIE (the act)

Before Meaningful Use became a capitalized term, there where all sorts of HIEs (the acts) going on. Providers with halfway decent practice management systems (most providers) were sending out almost all claims electronically, receiving electronic remittance and checking health plan eligibility for patients in real time. Most accomplished this wondrous HIE (the act) through claim clearinghouses, such as Emdeon, RelayHealth or Gateway EDI, which have built very sophisticated national HIEs (platforms). On the clinical side, anyone with a Surescripts certified ePrescribe module could send prescriptions to most any pharmacy in the nation, receive refill requests and complete medications lists for insured patients, all electronically with a click of a button. Just like the claim clearinghouses, Surescripts created a national HIE (the platform), complete with provider directories and algorithms to identify patients. The national reference laboratories were not far behind and most physicians with an average EHR could send lab orders and receive results electronically from LabCorp and Quest. A host of regional labs were quickly following suit and hospitals were not far behind. The newest trend consisted of electronic clinical summaries in CCR or CCD standard. These were starting to gain some traction as a means of communication with PHRs, such as Google Health and Microsoft HealthVault and here and there files were exchanged between EHRs. It is important to note that clearinghouses charged physicians only a nominal fee (some were free), Surescripts was free to doctors and so were reference lab interfaces.

Enter HIE (the organization)

Although HIE (the act) was occurring, it wasn’t spreading fast enough to meet the 2014 goals, so the Government decided to sow the seeds for organized regional HIE (the act). The first order of business for these State HIE (organizations) is to enable HIE (the act) of prescriptions, structured lab results and patient summaries, which are all requirements for Meaningful Use. Why would they need to do that when physicians are expected to adopt certified EHRs which already have those abilities? For a while now I’ve been puzzled by the National Institute of Standards and Technology (NIST) requirements for ONC certification of EHRs. Unlike the comprehensive CCHIT certification, NIST does not require that a certified EHR be connected to Surescripts and it does not require standard capabilities to interface with national labs. Why not? Because the Government funded State HIEs (organizations) are intended to insert themselves between the physician EHR and Surescripts or LabCorp and later probably claim clearinghouses as well. What used to be a simple point-to-point web service, just turned a bit more complicated, and what used to be free to physicians, will be so no more because HIEs (the organizations) must become sustainable businesses and will charge fees for transactions.

Perhaps it is all worthwhile if these newfangled HIE (organizations) can somehow foster comprehensive national HIE (the act). While State HIEs (organizations) are selecting and deploying various HIE (platforms), using various privacy and security policies and a multitude of directory structures (which may or may not be shared) and various standards of communications, it is expected that all will become federated nodes in the overarching Nationwide Health Information Network (NHIN) which is itself under construction. [I understand that the NHIN is just an incomplete set of specifications, but for some reason, I have this vision of thick, black rubber cables crisscrossing the country.] In the meantime, a more nimble sibling of NHIN, namely NHIN Direct, is also taking shape by proposing to use a completely different and much simpler addressing and transport construct, similar to email, which will allow physicians to send unstructured information to one another, presumably outside the HIE (organization) scope. Concurrently, the historical clearinghouses and Surescripts networks continue to flourish and function as before. In addition to the official State HIE (organizations), there are other private HIE (the act) efforts sprinkled around here and there, which may or may not be inclined to connect to State HIE (the organizations), and some large EHR vendors are starting to run their own proprietary peer-to-peer networks across organizations. Every HIE (platform & organization) is promising “seamless” integration of all these conflicting initiatives.


Long ago and far away, in the miraculous country of Shinar, all of humanity decided to build a tower so tall that it will reach heaven. Recognizing that people united by good communications are sure to succeed, the Almighty, who opposed this particular venture, disrupted work by fragmenting the one accepted standard of communications. Since the StarTrek Universal Translator was not in existence at that time, humanity became confused and the mighty tower was never completed. Thus, to this day, humanity is wondering around this earth perplexed at their inability to build tall enough towers.

Margalit Gur-Arie blogs frequently at her website, On Healthcare Technology. She was COO at GenesysMD (Purkinje), an HIT company focusing on web based EHR/PMS and billing services for physicians. Prior to GenesysMD, Margalit was Director of Product Management at Essence/Purkinje and HIT Consultant for SSM Healthcare, a large non-profit hospital organization.

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  6. Hey There. I found your blog using msn. This is a very well written article. I’ll make sure to bookmark it and return to read more of HIE Guide for the Perplexed | The Health Care Blog . Thanks for the post. I’ll certainly return.

  7. Thanks Margalit for spelling out clearly and concisely the HIE challenges. Being in IT for 20 plus years I have lived these challenges implementing similar types of initiatives (e.g. Enterprise Resource Planning(ERP)Customer Relationship Management(CRM) and Decision Support Systems(DSS)). The challenges you describe are very real, the Government has an opportunity of a lifetime to standardize on the policies and protocols allowing the vendors to provide the best platforms technology has to offer (that meets the standards) and may the best vendor(s) win. Leadership and standards are the keys to successful HIE!

  8. Nice Article.
    Once the HIE and NHIN gets established with all of the governance, security etc…Then all providers/patients/caretakers will benefit! But to get there will be the biggest challenge. Lots of solutions providers in the market, the bigger the vendor (allscripts and above) the more the costs and the lesser the providers and the patients would embrace them! Got to be simple, cheap, standardized and provide core features.
    Merle: Personal devices are good for privacy and security, but what about practicalness, research, intelligence etc. Also what standard is it stored in? XML? Discrete data once imaged becomes less meaningful so we should avoid images if at all possible……I am interested in talking to you, perhaps some synergies (we have a PHR prototype based on MS technologies)

  9. Margalit, if you visit our website, medkaz.com, I think you’ll find answers to most of your questions about how patients and doctors use the MedKaz™ System — and how it works for them.
    The operative word here is “system” since the MedKaz device is but one part of a system that includes what we call a Patient Record Manager (PRM) for the provider who keeps paper records (think EMR-Lite), and a web portal and server that give our system extraordinary flexibility.
    The MedKaz device is self-contained. It includes both the applications and data. When the doc plugs it into his/her computer and the patient enters his/her password, it displays critical info the doc needs and currently must struggle to get, such as the referral request (if the patient has been referred to a specialist), a health summary recapping the patient’s health issues and current complaint(s), a listing the meds they actually are taking and other important info, and an encounter summary the doc uses to record progress notes and information about the visit. By capturing these data as index fields, a patient’s records can be sorted, searched and accessed electronically. At the end of each visit, the doc’s assistant scans, verifies and uploads the documents to the MedKaz.
    When the MedKaz device is updated, we also update the provider’s PRM so the doc always has an electronic copy of the same records that are on the patient’s MedKaz. If records, notes, reports, etc., are delayed, when they become available they are uploaded to our server and downloaded to the patient’s MedKaz and the doc’s PRM.
    The doc can access his/her copies of a patient’s records on the PRM anytime they wish. The patient and MedKaz need not be present. The doc also can use the PRM to accomplish important “meaningful use” requirements, such as identifying patients they need to contact about a drug recall or disease management developments.
    If the provider already has an EMR system, we merely capture their output onto the patient’s MedKaz in any of several formats, eg., pdf, html, etc.
    Since the MedKaz is the sole repository of a patient’s lifetime medical record — we do not store a patient’s aggregated record on an Internet-acesible server, we provide automatic back up capability. The patient can automatically back up their MedKaz to their own home computer, to a commercial service such as .Mac or Mozy, or to their doctor’s computer (if the doc offers that service). Should they lose their MedKaz, they can obtain a replacement MedKaz device from their PCP and recover their stored records.
    Three other critical points. First, since the MedKaz contains the patient’s complete record from all their care providers, each care provider is privy to the treatment delivered by other care providers and can be sure his/her treatment is coordinated with theirs. Second, the Medkaz System doesn’t require massive, costly networks to get a patient’s records in the hands of care providers when they are treating the patient. The patient accomplishes this simply by giving their MedKaz to the care provider. Third, the MedKaz System is financially self-sustaining.

  10. I think peer-to-peer is the right way, but I do have problems with the “patient controlled” part of this proposal.
    Those patients that are so inclined should be able to aggregate and control their records, but for the vast majority who is unwilling and mostly unable to do so, I would prefer that someone is designated as the responsible party for aggregation (even if it is just-in-time aggregation). My obvious choice would be the current PCP.

  11. …and one more thing: can I upload my USB files to the Internet and give my doctor access?
    I don’t know about you, but I lose one of those USB things every other week….

  12. Merle,
    One of these days you will have to explain to me how MedKaz really works. I understand the portability, but I don’t quite understand the usability of it from a provider perspective. For example:
    Do I have to load up the USB data each time I see you and do I have to work in your copy of it? What if I have an EHR already, do I have to copy and paste?
    What if I want to look at your records when you are not there (say some labs just came in)? What about hospitals?
    Finally, all providers are required to maintain their own copies of medical records, how do I control that and how do I sync the different versions?

  13. Margalit, a very informative post, as usual. There is, as you know however, a third “distinct” model which we call the MedKaz™ model.
    It is a distributed system in which each individual carries copies of all their medical records with them at all times on their key chain, around their neck or in their handbag/wallet, and gives them to a care provider anytime they require care. Their provider, in turn, can electronically sort, search and access them as necessary to treat the patient, and updates them so they always are current.
    This MedKaz™ model does away with the need for two of the costly and complex HIEs you describe, the HIE (structure) and HIE (platform,) and fulfills the HIE (act) at no cost — thereby saving hundreds of billions of dollars!
    It also gives the patient control over who sees their records and avoids the security and privacy fears associated with HIE (structures) and (platforms).

  14. Oh, yeah. “I’m from the government, and I’m here to help.”
    No sale, without authentic accountability (e.g., someone fails — they are FIRED).
    Heck, finally, even Bwarney Fwrank admits he screwed up —
    “WASHINGTON — When US Representative Barney Frank spoke in a packed hearing room on Capitol Hill seven years ago, he did not imagine that his words would eventually haunt a reelection bid.
    “The issue that day in 2003 was whether mortgage backers Fannie Mae and Freddie Mac were fiscally strong. Frank declared with his trademark confidence that they were, accusing critics and regulators of exaggerating threats to Fannie’s and Freddie’s financial integrity. And, the Massachusetts Democrat maintained, “even if there were problems, the federal government doesn’t bail them out.’’
    “Now, it’s clear he was wrong on both points — and that his words have become a political liability as he fights a determined challenger to win a 16th term representing the Fourth Congressional District. Fannie and Freddie collapsed in 2008, forcing the federal government to buy $150 billion worth of stock in the enterprises and $1.36 trillion worth of mortgage-backed securities.
    “Frank, in his most detailed explanation to date about his actions, said in an interview he missed the warning signs because he was wearing ideological blinders. He said he had worried that Republican lawmakers and the Bush administration were going after Fannie and Freddie for their own ideological reasons and would curtail the lenders’ mission of providing affordable housing.
    “I was late in seeing it, no question,’’ Frank said about the lenders’ descent into insolvency.

  15. Mark,
    I thought you would like the patient centric model and I suspect other folks would too. As to reinventing the Internet, it certainly seems that way. I do understand the need for directories and privacy and security policies, but I keep wondering if there are better solutions. There have been many advancements in web search techniques to include the thousands of terabytes of information referred to as deep web because they were unsearchable by Google. Something along this line, with proper permissions, seems the most appropriate solution to me. I could be wrong of course.
    I also agree, Elaine, that these are not necessarily conflicting models, and I also think that the number of EHRs will eventually be reduced to a handful. It is very possible that what we refer to as EHR today, will seem obsolete in a decade or so.

  16. I find this analysis helpful. As I understand it, lots of companies are vying now to develop EHR systems that would thrive, or not, in real-time HIE. (see related ML: http://bit.ly/akD9uf)
    So maybe the “federated” and “centralized” models aren’t contradictory. Presumably, most software/platforms will start out locally – in particular hospital systems, insurance units or geographic regions. As the more (and less) functional programs become evident by their use, over time we’ll shift toward nation-wide adoption of a few, effective and well-integrated EHR systems.

  17. From your description, it sounds like HIE (the organization) is re-inventing the Internet but instead of using simple standard protocols with peer-to-peer communication, is setting up a complex system of gateways and data stations using different protocols.
    This is surely a recipe for disaster.
    I personally think that a “pure” peer-to-peer system with the patient in control (and having the option of collecting their own information in a PHR) would be best. We don’t need HIEs (organizations) if everyone can communicate directly using standard protocols.

  18. In other words instead of simply picking one or two existing standards to help connect people and doctors to their health information, the administration created confusion by funding incompatible ways of doing HIE that will simultaneously cost more and be less functional. Many other countries are using either HL7-v3 or ISO-13606 as national standards for this purpose and are far ahead of us in HIE implementation — is it too late for us to use technologies that have been proven to work around the world for this?