Connecting Standards with Academia

I've been outside of academia for most of my career (although that changed recently).  One of my complaints about "academics" is that they are disconnected to some degree from the implementation work that goes on in the real world.  In my own classwork, I find that some of the value I bring to the classroom is that implementation work (with standards for me), and that is also true of many of the students who have been in the field (on other topics) that I'm studying with (be they healthcare professionals or Health IT geeks like me).

In retrospect, I've probably been a bit to hard on "academics" in general (but probably not in specific).

The challenges are interesting.  Academics are interested in developing knowledge.  Standards geeks are interested in taking existing knowledge and producing standard ways of doing things with it.  It's the innovation vs. standards juxtaposition all over again.  Good software developers are trained to reuse or build on existing work.  Academics are too.  However, what is missing here is the intersection of knowledge spaces so that Academics can discover what is going on in Health IT standards development (but not so much in the reverse, as there are enough academics involved in standards development that we get that input).  I think the challenge is that there aren't enough standards geeks in academia for the necessary cross-fertilization of information.

This has been a perennial challenge for standards organizations like HL7 and IHE for quite some time.  ISO seems to be a bit less challenged here, but then, I also find ISO standards to be somewhat less influential in the implementation space, more so in the process space.

Where do academics go for information? Academic journals. Yet, when I search PUBMED for recent articles related to standards implementation, I have a hard time finding them if I don't already know the name of the standard.  They don't naturally float to the top even when you include the term "standard" in the search and use appropriate terms to find them.  In looking through the various ways I could search, I don't find an easy way for these articles (few as they are) to show up where they might be relevant.  Compare this search targeted to find CDA or like standards, with this one that does much better.  You basically have to know who creates Health IT standards to find them.  Otherwise, those books simply aren't in their library.

The literature on standards is certainly lacking (see these searches related to CDA, QRDA and HQMF), but there is also no way to even give it some prominence in the search should someone even have interest in the topic of health IT standards.  It's like going to the automotive parts store and being told that you need the part number in order to get the part, but all you have is a description of it.  It might actually be helpful to add the standards to PUBMED, and to classify them and articles about them in MeSH in a way that makes them more accessible to people who might benefit from that knowledge.

Thanks to Bill Hersh for making me think about this a bit differently, and to Aaron for making me do some work that got me to analyze the issue.

Stupid or Cagey?

When I was in college a few decades ago studying computer science, one of my instructors ran a small software company that made telecommunications (modem) software that ran on the IBM PC.  It was patterned after a rather expensive software package, and nearly cloned the user interface.  The product as I remember it was appropriately called Mirror, or something like it.  The bigger and more expensive guy did what you would expect, which was sue to have the software changed.  My instructor took this battle to the courts, and as a result got a lot of publicity.  When the final judgement was made and went against him, he implemented the required UI changes overnight (which had already been under development since the battle started).  Stupid?  Hell no.  He was cagey like a fox.  The publicity covering the court battle also took into account the price (great) and product capability differential (none).  So he wound up with a lot of free publicity, which meant a lot of increased product sales, which more than made of for his costs in the battle.

Was his (larger) competitor stupid?  Not really.  Their moves were quite predictable, because the choreography of that dance was already laid down in business law centuries ago.  It simply had to play out, and my instructor took advantage of how it had to play out.

Why is this relevant today?  Well, I see another battle going on today where many of the moves are completely scripted in law and regulation set forth decades ago.  We could argue about whether those regulations are the right ones, but that's not really the point.  They exist, and so does the FDA, and it has to enforce them.  Whether or not they make sense.

I'm not certain what the goal is from the perspective of 23andMe, and have no insight as to what their strategy is.  However, it's pretty clear to me that all the FDA's moves are fairly predictable.  And so whatever game 23andMe is playing, it can pretty accurately predict the moves of its opponent, and is doing very little to discuss its next moves.  There are plenty of reasons why 23andMe could be playing the game it's playing that make sense, including publicity and getting policy changes made.  The former may not have as big a payoff as the latter (because the publicity available to them by "winning" a battle with the FDA would be huge), but either could be a rational business strategy worked out by 23andMe and its backers, or they could be looking at something completely different.  I have NO clue.  I do know enough to look just a bit deeper under the covers and see that this isn't a normal game.

I'm going to be quite interested in how this one turns out.  I gave my sample several years ago to 23andMe and I find the service to be pretty useful, and would certainly want continued access to my data.  But I'm not going to make any predictions.  I can only guess at the next move by 23andMe, even though all of FDA's options to that response are fairly transparent.

Empowering Us

One of the real challenges for the e-Patient movement is in the self-sufficiency (or perceived lack thereof) of patients.  Among all the P's in the healthcare environment:

• Payers 
• Physicians
• Providers 
• Politicians
• Policy makers
• Paycheck writers
• Pharma
• Product makers (vendors)
• Professional advisors (consultants)

All of these are considered to be sufficient to protect their own interests.  However, none of them view patients as being sufficient enough to project their own interests, and all of them feel that it is their role to speak for patients.  At the same time, patients (myself included) reject each of them as being adequate representatives of what we truly need and care about (see this list as an example).

As a general rule, patient's don't lobby, testify before congress, negotiate prices, aggregate themselves into societies or groups of like minded people (there are some exceptions for each).

So, how can we (as patients) get what we need?  I have some thoughts on this topic, but would love to hear yours.

My HITThanks

0. Thanks to Jon Mertz for HIT Thanks.
1. Thanks HL7 board and members for making HL7 standards freely accessible to everyone.
2. Thanks IHE staff for the last eight years of supporting me in a cochair role in Patient Care Coordination.
3. Thanks OCR for the memo to patients about OUR rights.
4. Thanks to Bill Hersh for getting me into his Informatics program.
5. Thank you ONC for allowing us to have an uninterrupted Christmas this year.

That last one may be a bit to hopeful, but perhaps if I get it onto the table, it might stick.

When SDOs Collide

The other day, a message like this showed up in my inbox.  You may have seen it also.  Now, the other part of the story is that SDO2 has been doing this kind of thing for years, and is already a leader in that space, to the point that the standard is being adopted by governmental agencies.

So, why would I spend my money this way? Whom does this benefit?  Certainly not my industry.  It might have been helpful if the problem being solved was a) one that didn't already have a solution, and b) needed one.

   Keith

P.S.  What's nice about this one is that I get to sit it out... I'm familiar with both SDOs but not deeply involved in either, and the purpose-of-use isn't my baliwick.  I'm just hoping they can learn from the prior SDO wars we've all seen.

---

The SDO1 invites Your Employer to be part of a new initiative to develop a machine-readable content classification standard that will enable the interoperable exchange of Content via System.

The Name of our Proposed Standard Technical Committee will define a Geek-speak-gobbelty-gook comprised of a standards-based vocabulary and content classification ontology.
The group will also collaborate on an eStudly-Capped-Acronym data model and format for exchanging content via the cloud or physical media. eStudly-Capped-Acronym will be designed to support government agency requirements as well as long-term electronic archiving of content.

All purpose-of-use stakeholders are invited to participate in this standard. The work will build on some other Reference Model produced by the yet another Community and on the CamelCasedNameWeCanTrademark eStudly-Capped-Acronym Specification; additional input contributions will be welcome.

As a member of the SDO1 eStudly-Capped-Acronym Committee, Your Employer has the opportunity to influence the development of eStudly-Capped-Acronym as an international standard. You ensure your requirements and use cases are taken into account and promote demand for compliant products.

You are welcome to join the eStudly-Capped-Acronym TC at any time, but in order to secure voting rights at the first meeting on 16 Dec (where a chair or two co-chairs will be elected) you must join by 9 Dec.

SDO1 membership is the only requirement for participation. You may choose between several dues/benefits levels (see link below).

Please let me know if you have questions about the eStudly-Capped-Acronym TC technical agenda or about getting involved in this work. We would welcome your participation.

Hug a Public Health Nurse

I spent half a day today with our town's public health nurse.  After that exercise, I can tell you that's a truly awesome and under-appreciated position.  I learned quite a bit about what a small-town public health nurse does, and their influence on the community.  The job is a cross between direct care, social service, junior filing clerk, senior filing clerk, master statistician, school gate-keeper, public health enforcer, and shoulder to cry on.  There's not a lot of supervision, resources, or space.  At the same time, there's a lot of discretion, and ability to make a difference within a community.

My respect for public health nurses, especially in small towns like mine has increased greatly today.

What's the ROI on that?

I teach IHE profile developers to have a one page attention grabbing slide that shows some numbers that provides the value behind a profile proposal.  It's the "Money Slide", the one that gets people to understand the value proposition.  And it's backed up with someone else's assessment of the value or cost of a problem.

Recently the S&I Framework initiative started a program to improve interoperability between EHR systems and Prescription Drug Monitoring Programs.  Now, this, like just about every other S&I Framework Initiative seems like a good idea. But there's some missing data here, and I'd love to see it.  This is the kind of thing that we should be assessing when we invest in a project.

First of all, let's look at the Charter, where it claims: "Prescription drug misuse and overdose is one of the fastest growing health epidemics in the United States."[1].  The footnote is mine, because the charter didn't include this link to the CDC Report (but perhaps should have).  The next statement: "One of the most promising clinical tools to address prescription drug abuse are prescription drug monitoring programs (PDMPs)" [2],[3] (again my footnotes).  I cannot judge based on the Charter any realistic evaluation of the utility of these programs are, because I don't know how much they cost [4] (see page 7 for estimates), nor how much they save. [5] (see page 4)

Come on guys, this was a five minute post.  You can do better than this.  Show me why an initiative is valuable without making me go Google it myself.  It would boost your credibility when you announce new initiatives.

Try these Google Searches:

• PDMP Effectiveness
• PDMP ROI
• PDMP Cost

Just that little bit might go a long way towards boosting the perceived value of what you are trying to achieve. If you could take it to the next level, and show the current integration and workflow costs that you are trying to eliminate, that would also help.