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Tuesday, August 25, 2009

FUD

FUD, or Fear, Uncertainty and Doubt is a marketing practice that involves undermining competing products. It was a classic strategy used by computer and software manufactures in the 1970s. In this report on the meeting of the President's Council of Advisors it appears that the practice hasn't abated.

My own interpretation on the remarks of Eric Schmidt, PhD. (chairman and CEO of Google) is somewhat different from those of the report I cited above, but the FUD is still there.

Dr. Schmidt's comments can be found here starting around minute 56 of the webcast. His remarks can also be found in the text that I transcribed from that webcast below. I've added numbered markers [1] to link my own responses back to his remarks.

Eric Schmidt:
"This is obviously very important stuff. I'm concerned you are solving the I.T. problem and not the Web problem[8]. The stereotype is that the I.T. problem ends up with large complex databases which are highly specialized, very difficult to change and they are often very proprietary in nature [1].

Everything I've read [4] indicates that that is an underpinning of what's really going to happen independent of whether the legislation suggests it or otherwise. So in thinking about how do you -- and there are many reasons why this is like to occur, the nature of the way it's funded, the fact there are very legitimate and real privacy and security concerns and the nature of the public-private partnership in medicine [2].
So I was trying to think about how would you solve this is you were a web person, an internet person? [3] One thing you would have is a rule that people's electronic health record is owned by them and that anybody who has one is required to, at the patient's request and written knowledge and all that kind of stuff, to export it. In other words, there is no closed data. I don't know if that is possible or not [5].
Another criteria that you could look at in your design of the system is ultimately the innovation occurs with graduate students in universities and teaching hospitals and so forth (not in the existing incumbent institutions) who are wild and crazy and have new ideas. That's how innovation in computing always occurs [6].
It is not at all obvious to me that this path will generate thousands of new startups of people who will be using the data that you correctly said is so interesting to come up with new and interesting solutions, new insights, new drugs, et cetera, et cetera.
And the third thing I've noticed is that in medicine, there is an awful lot of owned or not broadly available information that's clinical in nature. Most of the medical database seem to be copyrighted and not generally available for reuse, although there are some exceptions [7].
So it seems to me if you are a web person and you look at this problem, you say, "The person owns their data." You need to have lots and lots of people who can then take that data and aggregate it again, with the HIPAA laws and so forth and so on, and build applications, and then they have to have a relatively freely available set of information.

So are you all working on that problem? Is that problem a separate problem? I understand the legislation doesn't call for this stuff."

To answer Eric's final question, I'd like to tell you one of my favorite innovation stories of all time.

It started back in 2004 when I was tasked by the company I worked for at the time to make them a leader in standards. I was nominated for this role because I had worked for another company previously that employed many of the developers of the XML and HTML standards, and I had done some standards work in the past. So, I knew a little something about standards.

I joined HL7 and got involved in this weird thing called a connectathon, which was being held jointly by this organization called Integrating the Healthcare Enterprise (which I'd never heard of before) and HL7. At the time I was working on some very innovative technologies using natural language processing, electronic text, and XML. We had developed an NLP system to identify problems, medications, allergies and procedures in electronic text, code it in SNOMED CT, and mark it up in XML very similar to the HL7 CDA Release 1 standard.

IHE had developed a profile called Retrieve Information for Display (RID) which we would be demonstrating at HIMSS. To make the problem more interesting, NIST had developed an ebXML based Registry, and we wanted to work them into the demonstation. So we added a wrinkle whereby instead of just making the information available inside a hospital network, we all added some code to our systems to make the information available through NIST's registry.

All of the vendors invested a great deal of time, effort and money to participate in this demonstration, but much to our chagrin, the highlight of the whole thing turned out to be NIST (so much so in fact that we had to rearrange the booth around them)! Why? Because they could access every document from every EHR in the booth. Cross enterprise document sharing was born the way that many innovations are, completely by accident.

IHE realized that it had a hit on its hands, and made plans to develop this capability as a new profile, Cross Enterprise Document Sharing, or as it is rather well known today: XDS. In that same year, HL7 completed CDA Release 2.0, which was (and is yet), the latest and greatest version of its markup languages for storing clinical documents. CDA Release 2.0 is to clinical documents what HTML is to the web. I won't claim that XDS registries are the Google of clinical documents, but they are pretty darn close. Subsequent profiling efforts by IHE have radically closed that gap.

These profiles were subsequently adopted by ANSI/HITSP, and additional work with ASTM and HL7 on the CCD (in 2006), and by HL7 and IHE on other CDA specifications now provides us with a rather rich source of clinical data. We don't just have summaries in the HITSP specifications, we have the records.

None of this requires the preconditions of ownership suggested by Dr. Schmidt. That is simply that the patient has a right to the information contained within his providers Electronic Medical Record. I believe this to be existing policy under HIPAA, and further expect that to be strengthened under ARRA (based on remarks made by Dr. Blumenthal in response to Eric) .

So, yes, we are working on that problem. In fact, it's mostly solved from a technology perspective. What we need now is some good old IT investment to get that technology deployed.

On other feedback to Dr. Schmidt:

1. I don't care what technology you use to manage a business, it's almost certainly going to have a database behind it, and that database will be proprietary in organization, even though it may be built using standard database systems.

2. The knowledge represented in a "proprietary" database organizations is a strength when database structures efficiently address business requirements. I would expect Google to be proud of the proprietary data structures it uses to make web searching efficient. How the technology works is really beside the point. The fact is that healthcare providers need to use technology to manage the care they provide patients.

3. Just because they don't work for Google, don't assume that the people who are working to solve these sorts of problems aren't web people, or that the solutions aren't web based.

4. You aren't reading the right material. Read the standards, implementation guides and specifications, understand them, and then make your assertions. Try Googling XDS, HITSP or CCD.

5. Ownership and access to data are clearly two different things. Google didn't need ownership of all the data on the web to provide the huge value it does today, it just needed access. If you read current HIPAA regulation and ARRA legislation, it's pretty clear that patients have access. That is all that is needed to provide the value you want without even bringing up the issue of ownership. The best way to avoid a problem is, well, to avoid the problem.

6. Sometimes innovation is an accident in disguise (FWIW: My mother told me to always avoid always and never to say never).

7. I think it's a good thing that we have copyright laws to enable people and organizations who develop knowledge to benefit from it, don't you? What would you suggest the government do about that?

8. I think the real problem is an IT problem and not a web problem. The web problem we've got licked. The IT problem is how to get providers to deploy the right healthcare IT applications that enables the web solution. If you look at comparative industry spending on IT, you'll see where healthcare is compared to sectors like technology, banking et cetera. We need investment in the IT problem to enable the web solution.

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