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The Health Internet vs. the NHIN

There is growing tension within the Obama administration’s health team over who will control health data exchange: everyone (including consumers and their doctors), or just large provider organizations. The public debate will be framed in terms of privacy, security, and the adequacy of current exchange standards. But what really matters is who gets to make decisions about where health data resides, how it can be accessed, how much exchange will cost, and how long it will take for exchange to become routine.

Now is a good time to re-visit the plans for a National Health Information Network (NHIN), since we can finally observe and compare different health data sharing and exchange models in the marketplace. NHINs represent an older model that tries to use regional health information organizations (RHIOs) to establish secure networks, privately owned and operated by large provider organizations, mostly hospitals and health systems. The idea was that, over time, each private regional network would develop a gateway to other networks, creating a “network of networks” that would allow Stanford to talk to Partners Health, or Kaiser to Mayo. This communications model was enterprise/provider-centric. Patients/consumers were relegated to depending upon each RHIO’s policies for access to their health information. It was also a massively expensive and time consuming – think decades – way to build a health data network.

Suppose a RHIO is in your area. Your health data from hospitals, outpatient clinics, and other settings associated with Health System A, are collected and combined with health data stored in similar settings in Health System B. Possibly Health Systems C, D, and E have also collaborated with A and B in this RHIO. Most RHIOs have cost or will cost many millions of dollars to build and operate. They were greatly encouraged by the Office of the National Coordinator under the Bush Administration, and have received additional support and funding under the ARRA/HITECH provisions that establish Health Information Exchanges (HIEs). They generally create large database management systems housed in large data centers. They typically run on proprietary software, creating closed networks that may or may not permit access onto and off the Internet.

As an individual, you probably don’t have direct access to the RHIO data; only doctors and nurses are authorized to access your information. In most RHIOs, if you request access to your health information you must make the request the same way you would to your physician’s medical practice, and often you will receive the results on paper. Transfer of these medical records to another institution or to a new provider outside the RHIO is not possible in most cases, although some RHIOs and HIEs now permit patient accounts and viewing of selected data.

By contrast, the Health Internet is a more current model, centered on the patient/consumer. As the name implies, the Health Internet leverages the Web’s physical network and its open protocols and standards for health data exchange controlled by patients (and/or patient agents, like doctors, through authorized web services). The idea is to develop mechanisms that allow health information to pass easily across institutional and business boundaries, to anywhere it’s needed. The Health Internet builds on the same Internet infrastructure and conventions that under-gird the transactions of major industry sectors like banking, e-commerce, retail sales, home mortgage business, and media and entertainment. Because this infrastructure is largely already in place, although little-used by health care entities now, the Health Internet could grow and scale rapidly at very little cost.

You can already see how the Health Internet is developing. You go to a CVS MinuteClinic, or to a handful of doctors, hospitals, labs, or pharmacies that offer you a personal health record account that lets you transfer your data in machine-readable format at will. You also create a Google Health account (or Microsoft HealthVault, Keas, or any number of personal health record platform websites) which allows you to upload your machine-readable, structured health data to them.

Next, you give your Google Health account permission to transfer your summary health data: to a doctor in anticipation of a visit; to a family member who is helping look after you; to a service that offers decision-support based on your information to help you solve some of your health/wellness problems; or to a service that will organize your health data into folders categorized by date, or provider, or episode of illness. The important thing here is that you, the individual, are deciding when, why, and where your health information is going.

The Health Internet example we’ve described above is performing the foundational transactions required of a national health information exchange network, and is doing so today. There are many examples, and they are growing organically, without government support, without new and complex standards, and at very low cost.

Even so, the Health Internet’s growth is constrained mainly by the limited data available to patients and consumers from their doctors and hospitals, who continue to resist the idea that individuals ought to control their own data. They are also inhibited by patients’ reluctance to challenge their doctors and hospitals on this point.

These and other barriers also make the Health Internet an imperfect solution to the goals of secure and efficient interoperable health data transfer. For example, current coding and classification systems remain a complex stumbling block to any model of health data exchange. Various coding systems are in use. Some are proprietary and require pay-for-use, and others need to be extended and gain industry consensus to be truly useful.

But it is no coincidence that the British government is investigating using both Google Health and Microsoft HealthVault for personal health data exchange, moving away from its own National Health Service program, after the latter spent billions on a national information network that doesn’t appear to work. The NHIN “network of networks” model in this country is beginning to flounder, too, and may never achieve its future potential as a national system. The reasons are partly political, economic, and technological. An NHIN system’s triple burdens – smoothing over competitive markets, enormous cost, and proprietary complexity – created so that large systems like the VA and the DOD, Kaiser and Geisinger, can exchange data without having to reach the Internet, will likely sink this ship even before the British program runs aground.

The Health Internet, on the other hand, has the obvious advantage of not “re-inventing the wheel.” As former Intel CEO Craig Barrett famously said, “We already have a network for health data, it’s called the Internet.” Proponents of the Health Internet argue that, while health data and privacy and security are very important, the data themselves are inherently no different from financial data or the kinds of personal information routinely — and very securely — transported over the Internet using fair market encryption and other security technologies to protect it from intrusion, capture, or breach. So why go backwards to create the equivalent of Prodigy or AOL in every state? It could take forever.

We want to give credit to David Blumenthal, the Obama health team members and the folks at HHS who are taking a hard look at how best to create a secure and efficient method for health data transfer in this country.

David C. Kibbe MD MBA and Brian Klepper PhD write together on health care market dynamics, technology, policy and innovation.

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Wes RishelJohn@ChilmarkMark KimballAdrian Gropper MDThomas Schwieterman MD Recent comment authors
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David C. Kibbe, MD MBA
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David C. Kibbe, MD MBA

Dear Margolit: I think there is “violent agreement” among most commenters and Brian and myself regarding one important thing: individuals (patients/consumers/citizens/people) ought to be able t control their own health data.
If we start with this basic premise, which is clearly stated on the Health Data Rights website http://www.healthdatarights.org/
then the technology of personal health data storage and transfer can become much simpler to design, build, and implement.
I think the Health Internet is really nothing more complicated than the instantiation of this principle.
Kind regards, DCK

David C. Kibbe, MD MBA
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David C. Kibbe, MD MBA

Dear Wes: Thanks for your comments, and I stand corrected. In the future I’ll defer to your excellent blog post for a description of NHIN and CONNECT. I also think that the eHealth Collaborative patient data sharing project you refer to is real and substantial progress, and I’m glad that we agree on the point about simplifying NHIN and the protocols involved, so that health care organizations of all sizes can interact with one another and with PHRs. However, the example of five RHIOs taking “weeks” to “create the ability” to share data, amongst themselves, is exactly the kind of… Read more »

Wes Rishel
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The statement that the NHIN was “created so that large systems like the VA and the DOD, Kaiser and Geisinger, can exchange data without having to reach the Internet” is blatantly untrue and contrary to everything that the ONC ever published about the NHIN. The NHIN was in fact built to run on the Internet. Recently five small HIEs (RHIOs) working under the auspices of the California eHealth Collaborative created the ability to share patient data among them over the Internet in a matter of weeks using the NHIN protocols and the open-source code that was created as part of… Read more »

Margalit Gur-Arie
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Margalit Gur-Arie

OK, since everybody seems to be on this thread, I will ask a few questions. What exactly is a Health Internet? I don’t understand the purpose for having some sort of platform, as open source as it may be. As far as I can tell Internet is Internet and it is already being used for millions of health care transactions. Every lab order and result to/from Quest goes over the regular Internet via web services. Surescripts is accessible via web services and so are eligibility checks with payers. I’m really not sure what these folks are trying to do, complicate… Read more »

David C. Kibbe, MD MBA
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David C. Kibbe, MD MBA

Dear John Moore: Thanks for your clarifications, but I’m not certain I find them very helpful. First, the fact that CONNECT is open source is important, but let’s not equate open source with simple or useful. Just because a piece of code is FOSS doesn’t necessarily mean that it works well or is suitable for use. (I’m aware that point of view is heresy, may lightning strike me now, immediately!) I am, like you, really happy that the folks at ONC, HHS, and the HITSC are re-evaluating CONNECT, and with an eye to making it “lightweight” and useful as a… Read more »

David C. Kibbe, MD MBA
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David C. Kibbe, MD MBA

Dear Adrian: You make a couple of criticisms, and then a very important point. Let me deal with the criticisms first. You and I both know that I would not equate Google Health, or Microsoft HealthVault, or any particular PHR platform, including your own, with the Health Internet. Our point was simply to give a real world example of how health data are already moving over the Internet today (without what John Moore in his comment describes as a “bloated NHIN CONNECT,” which was initially designed not to work on the Internet at all, but to connect RHIOs, that is,… Read more »

David C. Kibbe, MD MBA
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David C. Kibbe, MD MBA

Dear Mark: I think you’re being unkind to say that I ignored Karen’s good comment, helping to explain the French Carte Vitale, and something about it’s history and use. Her comment was appreciated, and I learned a little more than I knew before. I wasn’t aware that I needed to respond further, but I am glad to do so to avoid any hurt feelings. The whole idea of blogging is to encourage sharing of information and opinion, and I really do appreciate your comments. The card with a chip on it is a good idea. I am eager to know… Read more »

John@Chilmark
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Hi David, Good post overall but just have a few points of clarification: First, the NHIN and the CONNECT platform that the feds built (based on open source) does not use some form of proprietary network, it uses the Internet and with the on-ramping ala CONNECT, just about any coder, representing a RHIO/HIE/hospital etc., can connect into it. Secondly, the NHIN, as Adrian points out, does not require some uber-database in the sky but works on a federated model. Ye, CONNECT does have a MySQL database associated with it but this is not a requirement for to use the NHIN.… Read more »

Mark Kimball
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Mark Kimball

David,
You asked Karen for more information about France then ignored her follow up. The key point in the way records are in France is that they belong to the patient. There is no need to construct a vault or portal to providers because the patient always has his record. Providers at all levels get the information from the patient — which is the exact opposite of what you want to talk about.

Adrian Gropper MD
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I commend the intent of this posting – to get health information moving. The comments it has elicited are also valuable because they illustrate the problem with equating Google and Microsoft, tethered or un-tethered PHR with an Internet approach. The Health Internet need not imply or require centralization as implied by dominant “consumer aggregators” such as RHIOs, Google or Microsoft. The Health Internet does not require a PHR. The Health Internet does require a way for patients to identify themselves electronically to the provider that has their data in order to control the flow of that data. The provider needs… Read more »

David C. Kibbe, MD MBA
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David C. Kibbe, MD MBA

Dear Tom: Thanks for your comment. It made me remember my visit to a local banker in NC in 1997. I had an online account with a larger bank, but when I asked this gentleman about his bank’s online check pay and other account features, I got a 20 minutes lecture about how “people will never allow their financial data to be up on the Internet” because it’s just too risky. The point being that it takes time to change attitudes, and we’re going to find, just as we did with online banking, that the Health Internet will bring out… Read more »

Thomas Schwieterman MD
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Thomas Schwieterman MD

David, Connected Health with the “patient at the center” is the future. The phrase “patient at the center” implies that the patient has access to and control of his or her health data. Most industries have long since figured out how to securely transmit sensitive data over the internet. The Healthcare industry’s Health Internet would simply be another manifestation (albeit a high level one) of existing net based technologies. The Health Internet opens the door for widespread innovation in assisting patients with their own disease management- a facet that will prove essential as the shortage of qualified healthcare professionals becomes… Read more »

David C. Kibbe, MD MBA
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David C. Kibbe, MD MBA

Dear David: Thanks for your comment. You and K2 are completely on the same wavelength here, and advocating for the patient/consumer to make the selection about where his/her data are collected, tracked, and transported. Your points about the legal constructs that will determine some data flows, e.g. to public health or to CMS for quality reporting, is an important element to give consideration as the Health Internet rolls out. Where the local and national public health institutions fit into all of this has been a somewhat forgotten topic, and for longer than I can remember we’ve paid too little attention… Read more »

MONIKA
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David McCallie
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David McCallie

David, I share your enthusiasm for the “health internet” but I think you have misrepresented a few things. First, as far as I know, the FHA’s NHIN would use the regular Internet for connectivity between HIEs. That’s not the problem. The problem is that the NHIN (and State or regional HIEs) are based on the premise that the provider (physician) is the one who should make the decision where the consumer’s data is aggregated for sharing. The provider would presumably pick a “local” HIE, regardless of whether or not the patient/consumer wants his/her data to be hosted via that state’s… Read more »