NHIN Direct: Open Healthcare Records and Government as a Platform

In my advocacy around Government 2.0, I’ve been focused on the idea that government should act like a platform provider rather than a complete solution provider. That is, government should lay down rules of the road, create core functionality that others can build on, and then let the private sector compete to flesh out the offerings.

Gov 2.0 Expo 2010
You’d never think it from the right-wing media hysteria around the administration’s health care initiatives, but some of the best thinking about minimal government intervention is happening right now in healthcare. I met yesterday morning with Dr. David Blumenthal, the National Coordinator for healthcare policy, and I was struck by how he is focused on the idea of the least possible government intervention in the market. “We have to do as little as we have to do in order to have a strong probability to succeed,” he told me.

You might ask, “What is it that you have to do?” That is laid out in the 2009 Stimulus bill. Among many other things, the Stimulus allocates a large pot of money (some $20 billion) in direct payments to hospitals, medical practices, and other health care delivery organizations if they implement “meaningful use” of electronic health records. The idea is to jumpstart the adoption of electronic medical records, which have been demonstrated to have a big impact on lowering cost and improving patient care. (Here’s a Markle Foundation report (pdf) that gives more detail on Meaningful Use.) No specific systems are mandated to achieve that meaningful use; that is left for the market to supply.

There is also substantial funding for Blumenthal’s office, the Office of the National Coordinator, or ONC. (This office was created by the Bush administration, but didn’t receive substantial funding prior to the Recovery Act.) But rather than building a massive, centralized system for electronic health records, ONC’s goal is to define the rules of the road for interchange of patient records. In internet-style, the expectation is that common protocols and file formats will allow vendors to compete on a level playing field to build the actual applications. But they aren’t just writing paper standards; they are creating building blocks that actually implement those standards. (The internet analogy would be software like Bind, which implements the DNS protocol, and the root domain name servers, which for many years were funded by the US government.)

I was swept from my meeting with Dr. Blumenthal into a planning meeting for NHIN Direct, an open system for interchange of patient records between physicians (and ultimately patients themselves), where I heard much the same message, which was summarized so eloquently by Dr. John Halamka on his blog yesterday morning:

The NHIN Direct effort philosophy is expressed in design rules

The golden standards rule of “rough consensus, working code” will be applied to this effort.

Discuss disagreements in terms of goals and outcomes, not in terms of specific technical implementations.

The NHIN Direct project will adhere to the following design principles agreed to by the HIT Standards Committee from the feedback provided to the Implementation Workgroup

Keep it simple; think big, but start small; recommend standards as minimal as possible to support the business goal and then build as you go.

Don’t let “perfect” be the enemy of “good enough”; go for the 80% that everyone can agree on; get everyone to send the basics (medications, problem list, allergies, labs) before focusing on the more obscure.

Keep the implementation cost as low as possible; eliminate any royalties or other expenses associated with the use of standards.

Design for the little guy so that all participants can adopt the standard and not just the best resourced.

Do not try to create a one size fits all standard, it will be too heavy for the simple use cases.

Separate content standards from transmission standards; i.e., if CCD is the html, what is the https?

Create publicly available controlled vocabularies & code sets that are easily accessible / downloadable

Leverage the web for transport whenever possible to decrease complexity & the implementers’ learning curve (“health internet”).

Create Implementation Guides that are human readable, have working examples, and include testing tools.

That should be music to the ears of any Internet developer, and should raise some serious doubts in the minds of any of you who have been swallowing the idea that somehow the Federal government wants to take over the medical system. There’s some fresh thinking going on here, influenced by the best practices of open standards and rapid internet development, about how government can use interoperability to stimulate market activity to improve the medical system.

NHIN Direct is only one of several projects that implement core functionality for interchange of electronic medical records. It is focused on simple use cases like exchange of medical records from a primary care physician to a specialist, or from one primary care physician to another, or from a physician to his patient. Other projects, like HHS Connect are focused on the much more complex problem of records interchange between large health providers such as the VA, the Department of Defense, and large hospital systems. This project demonstrates how interoperability can be used to reduce development costs by cooperation between agencies with overlapping missions.

This is health reform in the trenches of technology, where there are enormous opportunities for cost savings and better care. There’s really good thinking going on here. So don’t believe what you read in the paper.

Fellow Radar blogger Brian Ahier, who works as a health IT evangelist for a rural Oregon health cooperative, told me the following story last night, which illustrates how he counters the misunderstandings about electronic health records that he encounters in his daily work.

Trying to help rural providers in adoption of electronic health records has its own unique challenges. Many of these physicians practice in what is commonly called “fly over country.” And the residents in these rural communities tend to lean conservative. Bringing up the subject of digitizing his office, the country doctor says, “I don’t want all of my patients’ information put into this government database. I’m not going to be part of the government takeover of our health system.” I try to explain that the information is not stored in some giant government database. He certainly doesn’t want to hear about a federated architecture for health information exchange or standards and protocols for secure messaging. But when asked how clinical information gets to the emergency room for a doctor who is treating one of his patients, he says, “My nurse sends it by fax.”

So when I start to explain that his office can still keep the entire patient record, but sharing that data can be more securely and efficiently handled digitally, a light bulb seems to go on. When we talk about patient online access to their records and I draw the analogy to accessing your bank account over the Internet, we begin to turn a corner. We can leave the larger debate of health reform behind. It isn’t long before he starts to agree that it might just be possible for health IT to improve quality, patient safety and clinical outcomes while eventually lowering costs. Overcoming some of the fears based on false assumptions is the first battle, and now we can start to look at some of the serious technical barriers ahead in this journey.

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  • Brian Ahier

    NHIN Direct is going to be an important part of creating the Health Internet. The question that was asked of Dr. Doug Fridsma at HIMSS, “What is the motivation for providers to join a health information exchange if all they need is NHIN Direct to help them achieve meaningful use?” will need a strong effort at clarification. At our statewide HIE planning meeting today this question was again asked and I can see it being asked again and again throughout the states. Hopefully we can develop a clear and pithy statement that will address these concerns.

  • Jay Parkinson, MD, MPH

    While I think this sounds pie-in-the-sky pretty, it’s all theoretical. First of all, EMRs exist to solve two problems. The first is a billing/transactional problem. They’re designed to maximize physician reimbursement via upcoding for office visits and procedures. Docs are paid for office visits and procedures via highly specialized codes, not for quality, value, communication, or data analysis. Second, they’re designed to protect a doctor in court. That’s why the majority of information within an EMR is irrelevant to the actual clinical situation at hand. 95% of it is legal fluff and the rest is pertinent clinical information. Billing codes that aren’t actual personal diagnoses are meaningless to patients. Giving patients access to codes for 3 to 12 office visits a year isn’t that meaningful. It’s not enough data to even be considered dirty data. That’s not even considering the fact that we spend 1 hour with doctors a year on average and 8,765 hours on our own. Health is much more about our everyday behaviors than the clinical interactions we have documented in our doctors offices. Giving patients access to medical records simply gives them access to billing data and tests. If we think that labs and billing data changes health behaviors, I think we’re delusional. The real issue isn’t the data, it’s the desire to pursue happiness (and health is only one component of happiness) on a daily basis. Why do we want to behave in a healthy way to feel good today and decades in the future? What are other examples of people changing behavior because of data? We do change behavior based on communication…not so much data. We’re creatures of habit. Ninety to 95% of our activity can be predicted based on a months worth of data. I know that life is more fulfilling and more human with more effective means of communication and being social, but I can’t think of a situation where looking at data about my daily life has changed in any significant way the way I live my daily life for the better. I’d like to be proven wrong…
    Modern medicine has extended the life of Americans by 40 years in the past 100 years. We solved the problem of dying children with clean water, vaccines, and antibiotics…hence the extra 40 years of life expectancy. Now we’re stuck with the problem of decades of unhealthy behavior and how to prolong our lives as 80-somethings. I’d rather focus on maximizing happiness in the most exciting and active years of our lives. Happiness and experience until we naturally fade away is the new health. Modern medicine with their pills and stents is surely not.

  • Tim O'Reilly

    Jay -

    While I agree 100% with your comments, I don’t see their relevance to NIHN Direct. I didn’t suggest that patient access to records would make patients healthier. I just suggested that the way the ONC is going about developing software is in keeping with the minimalist best practices of internet development.

    So I’m a bit puzzled.

  • Karl Fogel

    Halamka’s summary is indeed music! But I hope the focus on setting standards doesn’t neglect the need for real-world reference implementations (*cough* early days of the Internet *cough*) — they’re what prove a standard.

    Good reference implementations (particularly open-source ones) stimulate competition, and also put providers in a position of higher “potential energy”, so to speak.

    For example, when I had pneumonia a year ago, Mt. Sinai Hospital in NY took chest X-rays during the treatment. Afterwards, I asked them for copies. I understood the data would be big, and offered to pay the media costs and even reasonable data transfer costs — but they couldn’t do it: they didn’t even have a mechanism for giving the patient copies of their own data. My question came from Mars.

    I thought of pursuing it up the chain, before deciding it wasn’t worth it. But imagine how different the conversation would have been if I could have said “You know, there’s a system you can install that solves this problem, and other hospitals are already using it…” It’s not that they necessarily would have leapt to install it, but the availability of the system changes the balance in the conversation. The question starts to be “Why are we deciding *against* installing this?” instead of “Why should we go to special efforts to give this patient some X-rays?”

    The former question is one that keeps coming back, whereas the latter is one where you say “no” and then it gradually disappears from the radar screen. Standards plus useable reference implementations produce more of the former kind of question, I think.

  • Jay Parkinson, MD, MPH

    Tim,

    I support NHIN and absolutely think their approach is spot on in terms of the minimalist best practices…absolutely…I just don’t know if data liquidity is going to make a difference in the health of our nation. It probably won’t hurt. I just wanted to highlight that liquid health data isn’t the answer to improving the health of Americans. It can’t hurt (I think) but will it really help? As a physician, I’d like to see labs trended and an updated list of current and past diagnoses. I don’t want to see legal fluff. I don’t want to see upcoded diagnoses that are irrelevant to the patient in my office…it could actually harm my decision-making if I thought that a patient had a particular diagnosis but didn’t because of an upcoding issue:

    http://www.boston.com/news/nation/washington/articles/2009/04/13/electronic_health_records_raise_doubt/

    Dirty data that may or may not be clinically relevant is difficult to understand and should be questioned given the jobs that EMRs do within healthcare. Is data liquidity the answer? I don’t know…there are serious issues with health data in EMRs. Is the minimalist strategy for enabling data liquidity the answer? Yes. I think it’s one of the most forward thinking things happening in government today.

  • doug kittredge

    a couple comments:
    - I agree with the minimalist approach, not so much from fear of government, as no one has a crystal ball, and minimalism allows for more rapid changes.
    - i think some of the commenters are confusing having the data accessable (able to transmit it) and displaying it.
    - things may be raw now, but think of the changes from text-based AOL to web views. Once we get experience getting the data, i am sure vendors will step in to provide filtering/sorting/viewing in a way that maximizes the value for a clinician.
    - i am not a clinician, but it seems to me that some data is better than no data.

  • Brian Ahier

    After speaking with Arien today I have a bit clearer picture of things…

    NHIN Direct is a project to draft specifications and services. A good analogy is the Internet itself. When send email, you use SMTP, if you want to browse the web, you use HTTP, if you want to consume web services, you do REST or SOAP over HTTP, but you are still using the Internet. The analogy for NHIN Direct could be a set of libraries that help you do SMTP, HTTP, REST and SOAP.

  • Arien Malec

    I’m the coordinator for the NHIN Direct project.

    Tim – Thanks for the write-up and I appreciate your feedback!

    Karl – Amen, brother! Reference implementations are definitely in scope. My experience in software development is that the best parts of specifications are the working implementations, test scripts and samples (the non-normative parts), and that the language lawyer parts are useful as reference once you have groked the samples. I also have a strong belief in live test sites and test cases to drive conformance.

    Dr. Parkinson – I’m explicitly trying to support, among other things, a medical home model. So patient engagement is in scope, but so is sending a referral electronically and getting back the summary of care record from the specialist, or the discharge summary from the hospital. As for the content garbage-in-garbage-out problem, if the documentation and encoding systems are designed for claims, and include rule-out codes, the data may not be as useful; if the problem list is a clinically relevant list of current problems with good terminology, it will be quite useful. But to be clear, this project’s aims are to solve the transport problem. EHRs are getting better at the clinical content part of this over time.

  • Jay Parkinson, MD, MPH

    Arien-

    I do commend you on this effort. I fully support it. I unfortunately don’t have a ton of faith in the clinical systems that look and function like Windows 95 to create clinically meaningful, up to date data. It’s a tough problem to solve. And unless doctors start getting paid for quality rather than quantity, it’s going to be a tough road ahead getting meaningful data that’s clinically relevant. I don’t think it’s about the interface nor the EHRs, it’s about the type of data needed to power the monetary transaction of healthcare that populates enterprise legacy systems. We need to transfer clinical data, not billing data. The problem is it’s probably impossible to split the two.

    Keep up the good work.

  • Tim O'Reilly

    Jay -

    Really good reminder about the need to transfer clinical data, not billing data. It’s easy to forget how much of our system is driven by the payments rather than the care.

    This might be a really good discussion to have at our Gov 2.0 Expo.

    While Arien is right that this is out of scope for NIHN Direct, we need to get policy makers focused on healthcare reform and not just healthcare payment reform.

  • Brett Peterson

    From my perspective as an active participant on NHINdirect.org, I think the values and principles on which the effort is based are on the mark. I want to ensure that the effort creates standards, services, and policies that are non-invasive to provider workflow and support innovation in the market (in other words, re-use relatively simple, proven, and currently deployed transport and packaging technologies without prescribing how they are put into practice (workflow)). Doing this in the context of a clear need for a widely understood trust model is a challenge, but that’s what makes it interesting.

    As a side note, I am of the opinion that NHIN Direct phase one output should be paired with a clear vision (if not exact policy detail) on how messages could bridge to NHIN or IHE approaches (if bridging is even necessary). Again, this doesn’t necessarily need to be prescribed (and perhaps market innovation will take care of the issue), but a vision of the possible can only help.

    Brett

  • SR

    I am not sure which EHR’s you have seen Jay but the EHR they use for over 560,000 patients at Group Health – is clinical data. In fact since the docs there are on salary they pay very little attention to coding their visits. The EHR is clinical data and it does trend vitals, tracks meds, and the patient has full access to their clinical data inluding visit summaries and customized patient advice from their provider directly to them.

    Take a look at the after visit summary demo here

    http://www.ghc.org/cddemo/member/MyGHTour.jhtml

    In this example, the patient instructions include advice on starting a jogging program along with a live link to a running web site.

    Since the 10% of people with chronic conditions account for 70% of all health care costs it makes sense to focus on how to meet their needs outside of the office and an EHR is a great tool for that as well once you include the patient in data capture. For example, ,there are many many people with diabetes who get real time data about their health conditions via a finger stick every day who change their behavior but most people who see their weight on a scale don’t.. Its not the data is the systems you create around the information that matters.

  • http://www.yourgoalbook.com Alex Work

    Not that I am a fan of the big brother thing, but if they know how much I made, can detain me for hours on end without due cause and god knows what else, what is going to hurt to have my health information digitally stored so that it can be accessed faster?