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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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
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 enterprise and provider/organization control of data that Brian and I along with many others consider to be an insufficient solution, one that well describes the old idea of NHIN, but does not describe the new model Health Internet.
Perhaps we agree on this, too. That would be great.
But I want to emphasize that in my opinion patient-centered health data exchange should not require a RHIO or HIE or a formal NHIN. These constructs may be very useful in some ways in some communities, but they are not the same thing as what David McAllie described above, namely a means of exchange over the Internet by which “(T)he data will be available to them (patients/consumers) regardless of where they live or travel. The data will be exposed to services selected by the consumer via standards-based, simple, Internet-friendly (RESTful) protocols, and not via some overly complex service-oriented architecture that presupposes all of the use-cases.”
With kind regards, DCK
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 the last NHIN project. The small HIEs which have substantial support for physicians in small practices co-demonstrated with Kaiser. Far from the NHIN being designed to let the big providers ice out small providers it was designed to enable their interaction. In many ways this was a David v. Goliath use of open source software and the NHIN protocols as this the CAeHC is striving to position itself as an alternative to CalRHIO.
There is plenty of room to simplify the NHIN work so far. But we should not conflate the need for healthcare organizations to interact with the very important need for PHRs.
I address this in my recent blog posting “Health 2.0: Take a Lesson From the Web” (http://blogs.gartner.com/wes_rishel/2009/11/18/health-2-0-take-a-lesson-from-the-web/).
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 things that are already working?
Regarding PHRs and their equivalence to banks, do I have to keep all my money in one bank? Do I really have to transfer the funds from each bank to one chosen bank just to see the balances? What if I want to see all the individual transactions for the last 5 years? That’s not really transferable.
Would it be acceptable if I used several banks (i.e. PCP, Hospital, Cardiologist, etc.) and refrained from physical aggregation of records? After all, if I am the consumer and I get to control my medical records, I should have the choice to keep my records from being aggregated, be it by HIEs or RHIOs or commercial PHRs.
This way I don’t have to manage anything. I’ll access the various banks only if, and when, I need a comprehensive picture of my finances and at that point I can see everything, not just transferable summaries. Other than that, let everything stay where it is.
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 means of moving data across the Internet from providers, to PHRs, etc. etc. It would be great to have this work out well.
But I’m not convinced that CONNECT is even necessary for the Health Internet to function at a high level of security and data integrity. As we’ve discussed in the past, OpenID/OAuth may be satisfactory for identity management without further layers, at least for basic summary health transfers. Keep it simple, build on what works, rather than impose a system that tries to contemplate all the possible use cases and every type of data that could be transferable.
I’m also not convinced that splitting hairs about RHIOs, HIEs, WHIOs (see Extormity.com news update about the latter), is all that useful an exercise. These efforts certainly may have their benefits, and I hope they are successful in many places around the country. The point is that local or regional repositories of health data are not required for the Health Internet to work, provided patients/consumers have access to the data stored about them in various places like pharmacies, labs, hospitals, and doctors offices.
I’m afraid that many millions of $$ will be spent on these RHIOs and HIEs in the assumption that they are necessary for health data exchange to occur, and that they are foundational building blocks upon which a “NHIN” will be constructed. I think this idea needs to be challenged, and the money better spent.
Kind regards, dCK
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, private networks, and very large provider organizations.)
While Google Health isn’t a requirement for the Health Internet to exist, I want to give credit to both Google and Microsoft, as well as a host of others, like your own company MedCommons, Keas, Dossia, and many, many others, for actually starting to give patients the control over their health data and information, its place of storage, and its reason for transfer. This is what really matters.
Nothing Brian and I said or implied should be taken as an opinion that “centralization” of health data is a necessary component of the Health Internet. “Dominant” consumer aggregators may come into being like the “dominant” banks or “dominant” eCommerce companies have come into being, primarily as a result of consumer demand for a trusted brand to help them collect, organize, and transfer their data. But they should not be obligatory. I have a friend who keeps most of her considerable fortune in $100 bills buried under a building somewhere. No one is forcing her to put her money into a bank, or a brokerage account, and both Brian and I would defend the right of any citizen to refuse to allow his or her health data to be placed in any PHR entity.
So, you’re right, the Health Internet doesn’t require a PHR. But we never said it did.
Then, you hit the zinger. You said, “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 to trust the source of that ID, be it a driver’s license or a French federal ID card, and the law must require them to release all legally mandated information when presented with an electronic request and an acceptable digital ID.”
This is where the work of the Health Internet really needs to occur, as I know you and I agree. All Brian and I are really saying, is that regional repositories and provider-controlled networks are not necessary for this work to occur. The Internet is a highway that can accomodate patient-controlled health data exchange, provided the rules of the road and a legal system are put in place to help govern the traffic.
Very kind regards, DCK
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 how the data are loaded onto the chip in the first place, and how these data elements are updated over time. Do the French maintain a master patient index nationally, something like a SS# for health identity? Does my doctor update my card at every visit? Can I transfer the data from the card to my computer, or to a web-based account online if I want to do that?
Kind regards, dCK
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. Data can be in any number of places and using simple publish/subscribe ala Atlas or something similar, given accounts (say a consumer’s) can be updated as new data is added to their file, be it at a hospital, a clinic or PCP.
Third, I draw the distinction between RHIOs and HIEs wherein RHIOs are established by some public entity for promoting public health and HIEs are private networks, established within IDNs for business reasons (most often referrals to the mothership). HIEs have been by and large successful as they have a clear business case for existence, RHIOs, well that’s another story.
As for the Health Internet, I do not see it as a radical departure from the NHIN but more as a subtle change in branding by HHS and the desire to re-architect the bloated NHIN CONNECT to something that is more lightweight and readily usable by a broader range of participants, as you rightly point out, Microsoft, Google, Keas and just about any other consumer-facing app/service. This is a very important point as it may finally provide the consumer with an understanding and value proposition that they can get behind for to date, far too much focus at HHS has been on the provider.
If we truly are moving to a consumer/patient-centric care model, it is time to re-architect things like the NHIN in support of such, which it appears at first blush what HHS is now trying to do. Hat’s off to them, its about time.
As an FYI, did write a post on the Health Internet with an illustration that other readers may find of value: http://chilmarkresearch.com/2009/10/01/nhin-the-new-health-internet/
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.
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 to trust the source of that ID, be it a driver’s license or a French federal ID card, and the law must require them to release all legally mandated information when presented with an electronic request and an acceptable digital ID.
The Internet takes over from there.
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 people who can’t conceive of online personal data, or whose interests are challenged by it.
On the other hand, your comments are evidence that many physicians have already turned the corner on this set of issues, and can visualize the benefits to their patients/consumers of the Health Internet. Much medicine is still very local, and I think it’s important for physicians all across the country to move this agenda forward in the interest of improving quality of care and continuity of care.
Kind regards, DCK
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 reality.
Without quality patient engagement in managing their own healthcare thru innovation, any system is destined to struggle to maintain costs and provide quality outcomes. Putting patients at the center with regards to their own clinical data is a key enabler of this innovation.
Great post David!
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 to public health and its IT infrastructure. I’m hoping that, as per Google Flu Trends, there will be new opportunities from the movement of data over the Health Internet to help the public health folks do their jobs well.
Your last paragraph is well worth repeating here:
“The beauty of the Health Internet model is that every patient can take control of their own data. The data will be available to them regardless of where they live or travel. The data will be exposed to services selected by the consumer via standards-based, simple, Internet-friendly (RESTful) protocols, and not via some overly complex service-oriented architecture that presupposes all of the use-cases.”
Kind regards, DCK
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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 HIE. In my opinion, this is wrong.
Under the Health Internet model, on the other hand, the CONSUMER would get to select where his or her data will be collected and tracked. That selection could be a “health bank” or a PHR, and might not be in the same region as the provider who generated the data, but would (of course) be no more than a URL away, via the Health Internet. And of course, the consumer would have control over access to his or her health data in the chosen location.
The other mistake that is frequently made is to assume that all health data flows are to be treated equally. This is not so. For example, some data flows from the provider’s EMR are regulated by existing laws, and will have to flow to the legally-mandated target. Other flows will go elsewhere. Not all data flows have to go through an HIE, though many locally-governed flows probably would use an HIE.
For example, the provider must supply certain reportable data to local departments of health. The provider’s eRx data flows to one of the national eRx networks. The provider’s “quality measures” may flow to a state-based agency, or to a regional agency, or perhaps to a third-party service provided by his EMR vendor. And of course, the data necessary under HIPAA for “treatment, payment, and healthcare operations” would flow to the proper payer.
But regardless of these legally mandated data flows, the consumer, not the provider, should be able to decide where the “sharing” data goes.
The beauty of the Health Internet model is that every patient can take control of their own data. The data will be available to them regardless of where they live or travel. The data will be exposed to services selected by the consumer via standards-based, simple, Internet-friendly (RESTful) protocols, and not via some overly complex service-oriented architecture that presupposes all of the use-cases.
Thanks, David, for essentially saying it: the emperor isn’t wearing clothes!
Whether HHS and the ONC care to acknowledge it or not, the concept of an NHIN is and always has been unsound both technologically and fiscally. As recently as last year, I recall reading that Dr. Kolodny, then the National Coordinator, asked the hundreds of attendees at a major healthcare conference in Washington if they thought the NHIN would be built — and virtually no one raised his/her hand!
The tragedy, though, is that we continue to spend lavishly (the HITECH Act provides $1.2 Billion) to build HIEs within individual states with the idea that these state-based HIEs eventually will be linked to form the NHIN. Assuming we live long enough and can borrow enough from China and others to build and maintain such a monster, what will we have wrought? I submit, a white elephant that no one needs, wants or uses!
While I agree wholeheartedly with your conclusions about the NHIN, I’m afraid I can’t agree with your solution. That emperor is naked, too. In my opinion, your “Health Internet” would be a disaster that would happen over and over again!
In a perfect world where everyone is honest and noble, it would make wonderful sense to store patient health records on Internet-accessible servers. They would be safe, private, and used only in the patient’s best interests.
Unfortunately, we do not live in such a world and most consumers, while overwhelmingly wanting to have access to their records themselves and for their care providers to have access to their records, don’t want them accessible over the Internet.
Study results dealing with this issue vary but the conclusion is unmistakable. A Markle study found that 80 percent “. . . are concerned about identity theft and fraud” and are concerned that their records might be used for marketing purposes and/or research without their knowledge.
A Lake Research Partners’ study found that “Americans’ top concern about electronic personal health records is potential misuse of their personal data. They found that 92 percent are concerned about identity theft and fraud, and that 89 percent are “very concerned about information getting into the hands of marketers.”
Lest someone think these fears are nothing more than paranoia, think again. More than 216 million records have been stolen or lost globally in recent years (see datalossdb.org) and 85% of US corporations have suffered one or more data breaches! And these examples don’t even address the breaches our supposedly most secure institutions like the White House and the DOD have suffered.
The head of data security for an international media company told me recently that nothing is absolutely secure on the Internet. If a hacker wants to hack into files on the Internet, they’ll succeed. And they will try either to show “they can,” or because they can sell the information they steal.
Given these facts, I think the public has it right. They understand the problem and risks of storing data on Internet-accessible servers and want no part of it. Count me among these masses.
What puzzles me is why intelligent people in healthcare are blind to these risks. To me, neither Microsoft, Google nor any other well-intentioned organization can guarantee that records accessible over the Internet are secure, private and exclusively under my control.
And does it make sense to disregard the strongly held sentiments of 70% to 90%+ of the public? Wouldn’t it be smarter to come up with a solution that the public will embrace? That’s where I would put my money (and have).
David,
Here are my three immediate concerns with that approach:
1) Data integrity – I prefer that data is not aggregated in one place, but kept in all the various provider systems that have originally generated it, since both accuracy and reliability would be better if the aggregation is done in real time. This could probably be mediated by better technology.
2) Privacy and Security – Large repositories of complete medical records are not conducive to either privacy or security. The drive to aggregate data in huge repositories, or big databases in the sky, has multiple reasons. Some legitimate, some less so.
I would like to remove the temptation to monetize such treasure in ways that are detrimental to the consumer. Providers are bound by HIPAA. I am not certain what those third party PHRs are bound by and reading the various privacy policies does not put my concerns to rest.
3) Advertisement – I also have a problem with targeted ads. If you as my doctor want to contract with a third party PHR, then I trust that you would pick one that is not used as a tool to increase health care costs by peddling the latest and greatest brand name prescription drugs.
To go back to my banking examples, there are no ads on any of my financial websites. When I log into my bank account, I am a respected customer, not a generalized consumer persona that is presented all sorts of third party consuming opportunities. I want the same respect from my doctor.
Finally a general comment. There doesn’t seem to be a mad rush for PHRs. If we are really serious about data availability, I believe the drivers should be placed somewhere else. The primary care setting seems to be the most reasonable, but it will have to be reimbursed.
I need to think about these things some more……
Karen, please write another comment and tell us about the French Carte Vitale, how it’s used, etc. – David
Umm…that’s really my point: how can you write about evolving medical record systems without even mentioning the way other countries have approached the issue?
The French have a longstanding tradition that the medical record belongs to the patient — not the provider or the payors. Paper portfolios were replaced over 10 years ago with a card that contains a chip to hold the patient’s medical history. Providers can read the encrypted information with special readers and add new notes. It’s also a payment card so billing information is automatically forwarded to the patients appropriate national fund and his chosen supplementary insurer.
Germany, which has long had a health payment card to automatically bill the patient’s insurance company, recently added prescription details and has been working on a combined medical record/payment card too.
As with alternate health care financing, experts in the US seem curiously resistent to examining what is actually working elsewhere.
Margalit: Thanks for your, as always, thoughtful comment.
Let me ask a practical question. Suppose I’m your physician, and as part of my health IT system, I offer you a PHR at Google Health, or HealthVault, or Keas.
Suppose that means that the ePrescribing, lab viewer, population registry, and other components of my EHR system are all integrated with your Google Health account, such that the data from my workflow activities involved in your health and wellness will move to Google Health, provided of course you give permission for this to happen.
Does this work for you? Or do you think that I need to pay for my own PHR application that I offer you? Would that make it necessarily better than Google Health or HealthVault?
What if the American Academy of Family Physicians were to contract with Google Health, or Salesforce.com, or some entity to provide you, my patient, with these services, free of charge to both doctor/me, and patient/you?
Does that increase your trust or make the value higher to you?
Honestly seeking answers and opinions, not trying to get specific answers…
Kind regards, DCK
I agree that RHIOs and NHIN networks are old, outdated and very expensive.
I also agree that the Internet is the preferred system to carry health data.
I don’t agree with the need for everybody to have a PHR somewhere, and be responsible for aggregating all their data in said PHR. I have great concerns regarding the use of the aggregate data thus collected. I also don’t think most people have an interest in actively pursuing such aggregation. The third concern is how will providers view data that is controlled and presented by the patient (oops, consumer).
What I want to see is similar to something the financial industry is doing. Like many people I have all sorts of accounts with various institutions. I can log into my Fidelity account and connect all my other accounts by providing proper credentials for each. Fidelity then will display all the disparate information in one dashboard. Fidelity is not aggregating my financial data. The integration occurs “on the glass” (on the screen only) or Just In Time (JIT) for me to see and peruse.
What I want is for my primary care doctor (remember, we want to strengthen primary care) to create this sort of portal for me. I will control the list of providers that I want to aggregate on the fly and I will control who I want to have access to this tool, other than my PCP.
I don’t want a “free” PHR from MegaSearchEngines R Us. I fully expect my PCP to charge an honest fee for the service. I don’t want to have to view Viagra ads just because I’m a 60 year old male in good health and I don’t want to receive 20% off coupons for the neighborhood mortuary as soon as I am diagnosed with a brain tumor.
I want my trusted (yes, trusted) primary care doc, my family and myself to have a place to go for good up to date information on my health status. We’ll share it if we so desire.
From a technology perspective, it is not at all difficult to accomplish. A bunch of published web services with proper addressing and credentialing infrastructure is all it would take and we have the technology to do all that today.
Dear Mark and Karen: Thanks for your comments. Karen, please write another comment and tell us about the French Carte Vitale, how it’s used, etc. Mark, I think there’s still time for some of the HIE activity to shift gears and utilize the Health Internet. I know of a couple of these efforts that are planning to focus on a Continuity of Care Record exchange among providers, using either Google Health or HealthVault, or both, as the patients’ PHR component. This could turn out to be more manageable from a cost perspective, and make the HIE easier to evolve over time.
Regards, DCK
What about the French system? They’ve been using the Carte Vitle for over a decade now. Why is it that articles like this never discuss how EHRs are managed there?
Spot on, David.
I don’t know if we need to do anything to hasten the demise of NHINs… they seem to be having plenty of problems just getting started. There is a lot of new government money going into NHINs and this will be wasted, however.
Hopefully the strengths of the Health Internet PHIN model will prevail. We should do everything we can to make this a success.
All the best,
.Mark