Empathy over implementations and another straw man

I think the recent work of the NHIN Direct implementation teams has been amazing. But I think that by implementing, all of the teams have succumbed to different extents a common software developer error. They are implementing rather than empathizing with their users.

There are two groups (possibly three if you count patients, but I will exclude them from consideration for just a moment) of potential NHIN Direct end users. But before we talk about that, I would like to talk about Facebook and Myspace.

Or more accurately I want to remember the controversy when the Military chose to block users of Myspace but not Facebook. This caused quite a stir, because at the time, Myspace was very popular with the high-school educated enlisted personnel, but Facebook, which even then was “higher technology” was more popular with the college educated Officers. Controversy aside, it showed a digital divide between different types of users.

Ok, back to Healthcare IT.

We have something strangely similar to this in the United States with the level of IT adoption with doctors.

On Having

Most doctors are low-health-information-technology. Most doctors work in small practices. Most small practices have not adopted EHR technology. Even those small practices that have adopted EHR technology have often done so from EHR vendors who have not focused on implementing the tremendously complex and difficult IHE health data interchange profiles. That is one group of doctors. You can call them Luddite, late adopters, low-tech or “the have not’s”. No matter what you call them, the HITECH portion of ARRA was designed to reach them. It was designed to get them to become meaningful users of EHR technology. (Note that “EHR technology” is kind of a misleading term because what it hass essentially has been redefined to is “software that lets you achieve meaningful use”. People still have lots of different ideas about what an “EHR” is, because people still have lots of disagreements about the best way to achieve meaningful use.)

I have to admit, I am primarily sympathetic with this user group. I originally got into Open Source because my family business (which my grandfather started) was a Medical Manager VAR. Our clients loved us, and they hated the notion of spending a bucket load of money on an EHR. I started looking for an Open Source solution to our EHR problems, and when I could not find what I needed, I started contributing code. There are a small cadre of people working on the NHIN Direct project that share my basic empathy with this type, the “have nots”, of clinical user for different reasons.

But the majority of the people working on NHIN Direct represent the whiz-kid doctors. These are the doctors who work in large clinics and hospitals that have found moving to an EHR system prudent. Sometimes, smaller groups of doctors are so tech-hungry that they join this group at great personal expense. These doctors, or the organizations that employ them have invested tremendous amounts of money in software that is already IHE aware. Often groups of these doctors have joined together to form local HIE systems. It is fair to say that if you are a doctor who has made an investment in technology that gives you IHE systems, you paid alot for it, and you want that investment to pay off. We can call these doctors the “whiz-bang crowd”, the EHR lovers, or simply “the haves”.

Today, in the NHIN Direct protocol meeting we had a polite skirmish (much respect for the tone everyone maintained despite the depth of feeling) between the representatives of the “have nots” like me, Sean Nolan, David Kibbe and other who are thinking primarily about the “have nots” and the vendors of large EHR systems, HIE’s and other participants in the IHE processes, these people tend represent the “haves”.

To give a little background for my readers who are not involved with the NHIN Direct project:

A Little Background

NHIN Exchange is a network of that anyone who speaks IHE can join. If you speak IHE, it means that you should be able to meet all of the requirements of the data exchange portions of meaningful use. It also means that you pretty much have to have some high technology: a full features EHR or something that acts like one. IHE has lots of features that you really really need in order to do full Health Information Exchange right. But it has never been deployed on a large scale and it is phenomenally complex. ONC started an Open Source project called NHIN CONNECT that implements IHE and will form the backbone of the governments IHE backbone. Beyond CONNECT both the Mirth guys and OHT/MOSS have substantial IHE related software available under FOSS licenses. There are lots of bolt on proprietary implementations as well. IHE is complex, but the complexity is required to handle the numerous use cases of clinical data exchange. Exchanging health data is vastly more complex than exchanging financial information etc etc. But to use IHE you have to have an EHR. Most doctors do not have an IHE-aware EHR.

ONC knew that HITECH would convince many doctors to invest in EHR technology that would ultimately allow them to connect to NHIN Exchange. However they also knew that many doctors, possibly most doctors, might choose not to adopt EHR technology. Someone (who?) proposed that ONC start a project to allow doctors to replace their faxes with software that would allow them to meet most, but not all, of the meaningful use data interchange requirements, without having to “take the EHR plunge”. This new project could meet all of the requirements that could be met with a fax-like or email-like “PUSH” model. I explained some of this in the power of push post. This project was called NHIN Direct.

Whats the problem

So what is the problem? A disproportionate number of the people who signed up to work on the NHIN Direct project are EHR vendors and other participants who represent lots of people who have made extensive investments in IHE. In short, lots of “haves” representatives. Some of the “haves” representatives proposed that NHIN Direct also be built with the subset of IHE standards that cover push messages. But remember, IHE is a complex set of standards. Push, in IHE, is much more complicated than the other messaging protocols that were under consideration. I have already made a comparison of the protocols under consideration.

IHE is really good for the “haves”. If you “have” IHE, then all kinds of really thorny and difficult problems are solved for you. Moreover, one of the goals of meaningful use is to get more EHRs (by which I mean “meaningfully usable clinical software”) into the hands of doctors. The US, as a country, need more people using IHE. It really is the only “right” way to do full health information exchange.

But IHE is not trivial. It is not trivial to code. It is not trivial to configure. It is not trivial to deploy or support. It is not trivial to understand. It could be simple to use for clinicians once all of the non-trivial things had been taken care of. But realistically, the number of people who understand IHE well enough to make it simple for a given clinical user is very very few.

The other options seemed to be SMTP or REST-that-looks-and-acts-just-like-SMTP-so-why-are-we-coding-it-again (or just REST). Both of these are much much simpler than the IHE message protocols. These would be much simpler for the “have not’s” to adopt easily and quickly. Of course, they would not get the full benefit of an EHR, but they would be on the path. They would be much better off than they are now with the fax system. It would be like the “meaningful use gateway drug”. It would be fun and helpful to the doctors, but leave them wanting something stronger.

The NHIN Direct project, fundamentally creates a tension with the overall NHIN and meaningful use strategy. As a nation we want to push doctors into using good health IT technology. But does that mean pushing them towards the IHE-implementing EHRs on the current market? or should we push them towards simple direct messaging? The answer should be something like:

“if doctors would have ordinarily chosen to do nothing, we would want them to use NHIN Direct, if they could be convinced to be completely computerized, then we should push them towards IHE aware clinical software that meets all of the meaningful use requirements”.

Given that split, the goal of NHIN Direct should be:

“For doctors who would have refused other computerization options, allow them to meaningfully exchange health information with as little effort and expense on their part as possible”

I, and others who realize just how little doctors like this will tolerate in terms of cost and effort, strongly favor super simple messaging protocols that can be easily deployed in multiple super-low cost fashions. I think that means SMTP and clearly rules out IHE as a backbone protocol for “have-nots” that are communicating with other “have-nots”.

Empathizing with the Haves

But the danger of focusing on just the requirements of your own constituents is that you ignore how the problems of those you do not empathize with the impact that your designed will have on other users. Both the representatives of the “have’s” and the “have nots” like me have been guilty of this. After listening to the call I realized that the EHR vendors pushing HIE where not being greedy vendors who wanted to pad their wallets. Not at all! They were being greedy vendors who wanted to pad their wallets -and- protect the interests of the doctors already using their systems. (that was a joke btw, I really did just realize that they were just empathizing with a different group of doctors than I was)

If you are a “have” doctor, you have made a tremendous investment in IHE. Now you are in danger of getting two sources of messages. You will get IHE messages from your other “have” buddies, but you will have to use a different system to talk with all of the “have-nots” who want to talk with you. That means you have to check messages twice and you can imagine how it might feel if for one doctor to be discussing one patient, across the two systems. Lots of opportunity for error there.

From the perspective of the IHE team, by making the “have nots” make the concession of dealing with IHE, rather than cheaper, simpler easier SMTP they reduce to one messaging infrastructure that eliminates balkanization. No longer will any user be faced with using two clinical messaging systems, instead they can have only one queue. Moreover, since we ultimately want “fully meaningful users” it is a good thing that the IHE-based NHIN Direct system would provide a clear path to getting onto the NHIN Exchange with a full EHR. From their perspective, having more difficult adoption for the “have nots”, and the resulting loss of adoption would be worth it because it would still get you faster to where we really need to be, which is doing full IHE Health Information Exchange with everyone participating.

Everyone wants the same thing in the end, we just have different ideas about how to get there! I believe that we should choose protocol designs for NHIN Direct that fully work for both sets of clinical users. I think we can do this without screwing anyone, or making anyone’s life more difficult.

The new empathy requirements

I would propose that we turn this around into a requirements list: We need a NHIN Direct protocol that

  • Allows the “have nots” to use NHIN Direct as cheaply as possible, that means enabling HISPs with simple technology that can be easily deployed and maintained using lots of different deliver models. (i.e. on-site consulting and server setup, ASP delivery etc etc)
  • Allows the “haves” to view the world as if it was one beautiful messaging system, and that was based on IHE. They should not have to sacrifice the investment they have made and they should not have to deal with two queues.

My Straw Man: Rich if you can read it

The IHE implementation group believes that all SMTP (or REST-like-SMTP) messages that leave the “have-nots” should be converted “up” into IHE messages and then, when they get close to other “have-not” doctors, the messages should be converted back “down” to SMTP. Which means that they are suggesting that HISPs that handle communications between “have-not” doctors should have to implement IHE in one direction and SMTP in another direction even though the message will have no more content or meaning after being sent.

The problem with that is that the HISPs that maintain this “step-up-and-down” functionality will have to cover their costs and develop the expertise to support this. This is true, even if the “edge” protocol is SMTP. The only approach that will work for this design is an ASP model, so that the HISP can afford to centralize the support and expertise needed to handle this complexity. That means low-touch support and low-touch support, and high costs translate to low-adoption. In fact doctors would probably be better off just investing in an ASP EHR that was fully IHE aware. So the IHE model is a crappy “middle step”.

But there is no reason that the HISP needs to handle step-down or step-up as long as they are only dealing with “have-not” doctors. If you allowed SMTP to run the core of NHIN Direct, HISPs could leverage current expertise and software stacks (with lots of security tweaking discussed later), to ensure that messages went into the right SMTP network. No PHI in regular email.  Local consultants as well as current email ASP solutions could easily read the security requirements, and deploy solutions for doctors that would send messages across the secure SMTP core. With careful network design, we could ensure that messages to NHIN Direct users would never be sent across the regular email backbone. I will describe how some other time (its late here) but it is not that hard.

But you might argue: “that is basically just SMTP as core! This is no different than your original approach. You are still screwing the haves!” Patience grasshopper.

To satisfy the “haves” we have to create a new class of HISP. These HISPs are “smart”. They understand the step-up and step-down process to convert IHE messages to SMTP messages. When they have a new outgoing message, they first attempt to connect to the receiving HISP using HIE. Perhaps on port 10000. If port 10000 is open, they know that they are dealing with another smart HISP, and they send their message using IHE profiles. Some smart HISPs will actually be connected to the NHIN Exchange, and will use that network for delivery when appropriate.

The normal or “dumb” HISP never needs to even know about the extra functionality that the smart HISP possess.  They just always use the NHIN Direct SMTP port (lets say 9999) to send messages to any HISP they contact. While smart HISPS prefer to get messages on port 10000, when they get an SMTP message on port 9999 they know they need to step-up from SMTP to IHE before passing to the EHR of the end user.

From the Haves perspective, there is one messaging network, the IHE network. They get all of their messages in the same queue. Sometimes the messages are of high quality (because they where never SMTP messages, but IHE messages sent across NHIN Exchange or simply between two smart HISPS).

Now, lets look at the winners and losers here. For the “have nots” the core is entirely SMTP. As a result they have cheap and abundant technical support. They are happy. For the “haves” they get to think entirely in IHE, they might be able to tell that some messages have less useful content, but that is the price to pay for communicating with a “have not” doctor. The “have nots” will get rich messages from the IHE sites and will soon realize that there are benifits to moving to an EHR that can handle IHE.

Who looses? The smart HISPs. They have to handle all of the step-up and step-down. They will be much more expensive to operate -unless- there is a NHIN Direct sub-project to create a smart HISP. This is what the current IHE implementation should morph into. We should relieve this burden by creating a really solid bridge.

This model is a hybrid of the SMTP and IHE as “core” model. Essentially it builds an outer core for “have not” users and an inner core IHE users. From the projects perspective, those that feel that simple messaging should be a priority for the “have nots” (like me) can choose to work with the SMTP related code. People who want to work in the interests of the “haves” can work on the universal SMTP-IHE bridge.

I call this straw man “Rich if you can read it”. From what I can tell it balances the core perspectives of the two interest groups on the project well, with places for collaboration and independent innovation. It’s more work, but it does serve to make everyone happy, rather than everyone equally unhappy with a compromise.

Footnotes and ramblings:

Don’t read this if you get bored easily.

I believe that this proposal excludes a REST implementation unless it acts so much like SMTP that SMTP experts can support it easily. Which begs the question, why not just use SMTP. SMTP fully supports the basic work case. The code already works and a change to REST would reduce the pool of qualified supporters.

I should also note that no one, ever is suggesting that the same program be used for email as for NHIN Direct messages. I think we should posit a “working policy assumption” that any NHIN Direct SMTP user would be required to have a different program for sending NHIN Direct messages. Or at least a different color interface. Perhaps Microsoft can release a “red and white GUI” clinical version of Outlook for this purpose… Sean can swing it…. or users could use Eudora for NHIN Direct and Outlook for regular mail. Or they could be provided an ASP web-mail interface.

We might even try and enforce this policy in the network design:

We should use SRV records for the NHIN Direct SMTP network rather than MX records. There are reasons for doing this for security reasons (enables mutual TLS) and most importantly, it means that there will be no PHI going across regular email. When someone tries to send an email message to me@fredtrotter.com their SMTP implementation looks up an MX record for fredtrotter.com to see where to send the message. If we use SRV for the DNS records, and you tried to send PHI to me@nhin.fredtrotter.com you would create an invalid MX record for nhin.fredtrotter.com such that MX for nhin.fredtrotter.com -> nothing.fredtrotter.com and nothing.fredtrotter.com was not defined in DNS. This will cause an error in the local SMTP engine without transmitting data. But the NHIN Direct aware SMTP server or proxy would query for SRV for the correct address and enforce TLS and be totally secure. Normal email messages to nhin Direct addresses would break before transfer across an insecure network but the secure traffic would move right along. Obviously this is not required by the core proposal, but it is a way of ensuring that the two networks would be confused much less frequently. This plan might not work, but something like this should be possible.

This is a pretty complex email setup, but SRV is growing more common because of use with XMPP and SIP. Normal SMTP geeks should be able to figure it out.

3 thoughts on “Empathy over implementations and another straw man”

  1. I think your “Rich if you can read it” proposal, which is to basically
    test to see if SOAP is supported and fall back to SMTP if not, is decent.
    It is compatible with the compromise I proposed on nhindirect-discuss
    earlier today regarding moving forward with multiple protocols in a
    pluggable fashion.

    Clearly one mistake we made was creating a whole team and proposal labeled
    “IHE”, since that term brings with it such baggage both technically and
    politically. We could have called it just SOAP, and asked the vendors
    with experience using SOAP in health IT (which is not exclusively IHE,
    but predominantly so) to define their proposal in the most minimal way,
    describing the precise WSDLs and WS-* support needed. Most importantly it
    would have had them avoiding the terms “we’ve already solved this in IHE”,
    because that not only does nothing to convince people of the simplicity of
    approach, it made them sound dismissive of the issues that drove demand
    for NHIN Direct in the first place.

    At the same time, characterizing the EHR vendor participants as being
    exclusively focused on large clinics and hospitals seems factually
    incorrect; it ignores participants like eCW, Greenway, MedPlus,
    RelayHealth, and AllScripts, all of whom have solutions that scale down to
    small independent clinics. It ignores those who have SaaS-enabled their
    apps so that small-clinic doctors with nothing more than desktop web
    browsers can have access to an EHR. It also doesn’t make sense to argue
    that vendors would participate in NHIN Direct to push inappropriate
    solutions – this is a voluntary process, and no one’s business interests
    are furthered by NHIN Direct not succeeding in helping the broadest base
    of doctors achieve MU1.

    I think the tension is really more along the lines of the following: once
    there is a lot of unstructured data flowing around, people are going to
    recognize both the benefits and pain of that – and with a little bit more
    foresight, learned the hard way already by folks who have gone before,
    maybe we can mitigate some of the long-term pain. This is directly
    evident in Matt Potter’s explanation of why the metadata regarding a
    patient ID in an XDR message is meaningful:

    http://groups.google.com/group/nhindirect-discuss/msg/79861c244babda42

    All the other metadata can be default-filled; it’s the patientID that
    matters here as a requirement on SMTP.

    The concern about data flinging around without a clear direct attachment
    to a specific patient feels real to me – it’s something that makes me
    empathetic, to use your term, to the have-not doctors who are trusting us
    to give them a system that makes their life better. If doctors have to
    constantly do extra work to make sure the data they send and receive get
    associated with the right patient both locally and remote, then it’s going
    to feel wrong. Maybe we should cross that bridge when we come to it, but
    it seems like a few moments of thought and some foresight on our part that
    could save millions of docs some pain in the first few years of using NHIN
    Direct is worth the consideration. In fact it could provide value even in
    a “pure” SMTP-SMTP backbone transaction, no IHE involved, if we’re talking
    about two EHR modules sending and receiving for whom maintaining that
    common identifier is rather important.

  2. Do I understand you to say that the “have nots” would be able to achieve meaningful use merely by performing exchange and without adopting an EHR? If so, I think you are mistaken about the meaningful use rule-making. The fundamental goal is to get EHR implementation, not merely health information exchange.

    **This post represents my personal opinion and should not be construed as official communication by the US Department of Health and Human Services.**

  3. Deborah,
    I find the use of the term EHR somewhat ironic in the discussion of meaningful use. An EHR is merely “software that can satisfy meaningful use requirements” then what you are saying amounts to “the goal is full meaningful use” which I can certainly agree with. However, the goal is obviously to encourage any steps to meaningful use, even partial ones. In fact the whole process of meaningful use becoming more complex over time is a concession to this notion. NHIN Direct was intended to allow partial fulfillment of meaningful use requirements. By definition that means without an EHR, since an EHR is that which completely enables meaningful use.

    So I do not think we disagree… we are just using different semantics.

    -FT

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