It is likely not a coincidence that David and I independently posted thoughts on the NHIN last night. The ONC has the HIT Policy Committee looking into it and this is generating interest the HIT blogging circles. His post is The Health Internet vs. the NHIN — A Matter of Control, Cost, and Timing and mine is Health 2.0: Take a Lesson From the Web. Subsequently I responded to his and he replied. These are copied at the end of this post. In it he asks whether I agree with him on some points.
First and foremost I believe that when we talk about the “Health Internet” there are two equally important problems to solve:
- consumer-controlled accumulating and consumer-directed use of health records, and
- inter-clinician exchange of health records in the course of caring for or managing the care of a patient.
I don’t believe that what has been written about the Health Internet describes a solution that deals with both cases. On the first point, above, I think David and I are in the same ballpark. The model of a PHR proffered by Dossia, Google and Microsoft has many of the fundamentals that are required: a clearly stated privacy model that can serve as the basis for informed decisions whether or not to use the service, access to consumers that is cheaper than Quicken on-line (i.e., free so far), a proactive consumer role in setting and changing consent for various kinds of information exchange, a way of verifying the consent on both sides (the consumer has to be logged into the web sites of both the PHR and the system that sends or receives data) and a rock-solid patient ID mapping (the mapping is created when the patient is logged in). I would argue that the use of “cloud storage” and good offices of the vendors to facilitate connecting to the PHRs is a valuable and highly desirable.
I have not been able to understand David’s view on point #2. One could read his stuff to say that the Health Internet is all the industry needs. Given the growing presence of the Internet patient-mediated transfers should also be used to get lab results to the ordering physician, ED notes back to the primary care provider, to find out whether a patient presenting at the ED with chest pain has had a recent angiogram and get the results if so and so on through any number of care transitions that we handle very badly now in the health care industry.
There are problems with patient-mediated transfers of information in the course of giving care. Many patients who are fully deft at doing business on the Internet will forget or slow down the process. Some are simply unable to actively mediate information flows. A few patients will knowingly disrupt the flow of information. For example, they may delete reports that suggest that they don’t need high-end analgesics. Anorexics, who already get more help on the Internet on maintaining their disease then they do on curing it, will also manipulate the information flow. Although these patients may be a minority, the potential for this manipulation will impact the credibility that physicians place on information received through patient-mediated sources.
Labs and other diagnostic facilities have legal and ethical obligations to ascertain that the information has gone to the ordering physician or one designated to receive copies. Information lost in transitions from hospitals to SNFs are a known source of death, and greatly reduced quality of life. I believe that solving the provider-to-provider problem for routine care delivery scenarios is every bit as important as patient engagement, particularly if one expects or hopes to maintain independent physicians as a viable participant in the US healthcare system.
Where we might agree is that the current conception of HIEs joined together in the NHIN has, at best, a very long lead time to create nonpatient-mediated exchange of healthcare information. It is not that some HIEs haven’t done well or the current NHIN approach can’t link them to one-another and to multi-regional providers. However, it is not clear that this approach can be built out in a reasonable amount of time even with mid-course corrections on the goals and standards in use.
There is an alternative to HIEs and the NHIN we should consider during this period of reexamination of the approach. It might be called The Health Internet for Providers. I don’t see why we can’t be sending information about patients with the same facility that one sends an email. This approach has several advantages
- The consent model can be essentially the same as the consent model that is used to send faxes today.
- Unlike faxes the package that is equivalent to an email can have a variable amount of structured data. In particular
- enough data to give the receive an easy shot at matching the patient with their data base
- data about who sent the info and what is the subject
- more structured data as appropriate to agreements between the sender and receiver. Presumably various incentive programs can improve the amount of structured data over time but the fundamental exchange mechnaism would not be broken.
- It should be straightforward to include in the approach irrefutability of transmission and receipt.
David McCallie has been talking this idea up with me and others and has come to a bright line to identify when a transaction should flow over the “provider health Internet” and when it should flow over the “consumer health Internet,” (i.e., be patient-mediated). If the transfer is one that would be expected now (by fax, letter, CD or whatever) then it should not need patient-mediation to be accomplished. If such transactions are sent electronically now they are usually “pushed.” Any kind of ad hoc searching of patient information (including looking up a critical patient in the ED) should be patient mediated. Perhaps there should be a “break the glass” capability for when the patient is incapacitated and there is no one else to give consent; that’s a fine point.
So I conclude that maybe David K and I agree on some things. At least with his peanut butter and my chocolate we would have a complete candy bar.
What follows is the dialogue from earlier on Wednesday.
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” (https://blogs.gartner.com/wes_rishel/2009/11/18/health-2-0-take-a-lesson-from-the-web/).
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.”
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