What we need is a system-neutral data structure for healthcare

During a web browsing session the other day I came across a very interesting blog post by Louis Gray titled “The Future: Operating System And Application-Neutral Data”. I enjoy reading Louis’ posts because I think he has a great vision for the future of personal computing, data, and “the cloud”

The blog speaks specifically to the ownership of personal data versus allowing companies to sit on it and possibly hold it hostage secondary to a lack of compatibility with other systems. The information you throw onto the internet defines who and what you are, more now than ever before, and you need to be able to move it around anytime from anywhere.

Louis calls for people to host their own data in a standardized format instead of having data stored by one service provider or another. He goes on to say:

If I chose to log in with GMail one day, I would authenticate who I was, and GMail would pull down my e-mail stream, complete with e-mail activity history (such as replies and forwards). The data would not be stored on GMail, but instead be more like a read-only process, whereby changes to data, including sent items, would not be stored in GMail, but written back to my personal “cloud”, if you will.

Hosting one’s own personal cloud with our own data is not an end run around large corporations in fear of Big Brother, but instead, for real, true, portability. In this situation, a longtime iPhone user could pick up an Android phone, enter my own personal ID (be it through OpenID or some other standard), and pull down my details into all of Google’s native applications.

My brother, Robert spoke of something similar back in June of 2009 when he questioned how to identify and distinguish oneself from all the other people roaming the internet.

I find it interesting that Robert and Louis both mention OpenID as a possible standard. OpenID is a decentralized standard for telling websites who you are. It’s a very interesting concept; one that healthcare could benefit from. Think of carrying your electronic ID with you from place to place. No more learning ten new user id’s and passwords each time you change jobs. How nice would that be? Another option would be to have only one user id and password that gave you access to all the data you were looking for from a centralized hub.

If you look a little deeper though, you’ll find that Robert and Louis stumbled upon a common problem in the healthcare industry; how to handle the stream of data coming form patients and how to standardize it and distinguish it from everyone else’s data. Let’s face it, pharmacy is all about data. We collect it, store it, mine it and analyze it. When you’re looking at a patient’s lab work you’re looking at data; when you’re looking at a patients medication list you’re looking at data. How about their medical history, allergies, radiology results, endoscopy report? Yep. Data, data, data and oh yeah, data.

The problem with healthcare in general, and specifically pharmacy, is lack of a standard to collect, house and access this mountain of data. Some talk about HL7 and XML, but that’s just the box that moves the data from place to place. It’s just a standardized shuttle craft.

Some organizations, like ASHP, are discussing the use of standardized nomenclature systems like SNOMED CT and RxNorm to control the structure of the information inside the shuttle. Like Louis’ GMail and smartphone examples from above, a patient should be able to access their data from any device at anytime in a format that can easily be read by any commercial healthcare system in the world. Of course healthcare would have to adopt some form of centralized data storage, but that’s just part of the solution. Imagine no longer transporting medical records to your physician or having to give your medication history to a pharmacist at the 24 hour Walgreens because the mom & pop pharmacy you usually go to is closed. It’s something to think about. With all the money the government is throwing around to increase the use of health information technology the timing is right to build a foundation like the one Louis writes about. Just a thought.

6 thoughts on “What we need is a system-neutral data structure for healthcare”

  1. Hi Jerry,
    Thanks for this post and pointing out this Louis’ work – I hadn’t come across it previously but will followup and read it now.
    I think you are already well aware that my mantra is that the health record is all about the data, and if that data is in a common, agreed, open, standardized and computable format then we can actually start to do cool things with the data – pull it into an application (be it an EHR, PHR, research repository, CDSS or any other you can think of), exchange it, aggregate it, query it etc. This can only happen when the data format is standardized and well defined so that you know exactly what it means.
    If we change the way we view the electronic health record (note the absence of capitalization here) from EHR applications to a health record that comprises just health data, just the health information itself, we are freed up to approach interoperability from a completely different direction. The current approach of trying to share health information from disparate EHR vendors via technical ‘bridges’ or messages is just not sustainable. In my experience if we take the time to get the foundations right by getting data into a standardized format, then interoperability will be orders of magnitude easier and can be sustainable into the future.
    Where that health data is held – be it central or distributed repositories or locally on a mobile phone or whatever – is a solvable technical problem. The final technical solution doesn’t really matter from a functional viewpoint and can vary from region to region, organization to organization, and could potentially be changed over time if we are data-centric rather than EHR-centric.

    My proposed suggestion for the standardized data structure is openEHR, which I work with on a daily basis. The recently published ISO13606 standard is effectively what openEHR was 5 years ago – openEHR having progressed and developed on the basis of further implementation experience.



  2. Exactly, Heather! I like your thinking. I was aware of your work and peak at it from time to time. Very interesting stuff, but mostly over my head. I agree with pretty much everything you said, but how do we get “people” to adopt a wide-sweeping change like standardized HIT data structure? Who can push the concept into reality? I think it’s a must if we want to really change the way HIT works for now and in the future. I’m looking forward to a time when data is structured independent of system or device.

    Thanks for taking the time to stop by and for the information. I trust you’ll have this all figured out soon so I can put my mind at ease.

  3. @Jerry Fahrni
    I’m observing a gradual change in thinking regarding standardized data. Certainly in Europe where ISO13606 is well known, many are well advanced in thinking about archetypes – for example, Sweden has adopted openEHR archetypes as the way forward for their clinical knowledge format. Brazil announced at the most recent ISO TC215 meeting in Durham last year that they intend to pursue openEHR in a similar way. There is other government interest and activity happening in many places – some are noted on the openEHR website – http://bit.ly/9iiwJJ. Similarly there is considerable activity in commercial companies, academic research (see the other links from the openEHR website).
    So a ‘top down’ mandate is one option and you can see why it might be attractive – if a national program can adopt standardized content and mandate its use to vendors in new systems and as the mechanism for integrating legacy data, then exchanging and sharing information between systems becomes relatively trivial – common data structures in a message wrapper.
    Fascinatingly, I think it is fair to say that the least interest in 13606 and standardised structured data has been shown by the US to date! The IHE/NHIN paradigm of “fill the gap between standards and vendors” seems to overwhelm other alternatives and activity.
    The second option is also gaining traction, but from the opposite direction! I’m talking about the grassroots push upwards (mainly for data access outside applications, not specifically openEHR) from consumers and clinicians – the end users. We have seen calls for “Gimme my damn data” a la ePatientDave and the Society for Participatory Medicine; and the creation of new #speakflower group. In addition, professional groups such as the American College of Rheumatologists are currently drawing from the international pool of archetypes and building their own domain specific openEHR archetypes to represent the data they need to care for their patients and to utilize for their research.
    The eHealth environment is changing… ;-)



  4. Perhaps there is no such thing as “open” formats; there is simple the illusion that specifications are open. I think it is possible to reinterprete the standards making process as signficantly influenced by vendor and personal bias, political maneuverings, and other significant constraints. In saying that we need to wrestle the formats from those that hold them–which is certainly a laudable aim–is to open up the same old debates by a similar (or same) set of people and organisations over what the new standard will be.

    I like the architectural thinking behind your and Louis’s views. The Personal Data Cloud is a really good metaphor. One thing it does suggest is the wrestling of the API from the current vendors. But to develop a common, and neutral format/representation for that data may be possible to achieve through standardisation. The space that might open up is a community of collected meaning–something like folksonomy (as the Microformat community is trying to do). Patient to GP to local clinics to local Acutes. If standardisation is the pre-condition for the personal health cloud, then we’ll still be talking about the same thing in 10 years.

  5. Hey Heather,

    Sometimes, in typical American fashion, I forget to look outside the US for cutting edge thinking; something of which you certainly have plenty of. I’ve been a pharmacist for more than a decade now, but am relatively new to the HIT game. The lack of standardization of healthcare data in the United States never ceases to amaze me. Banks, grocery stores and even libraries do a better job of standardizing and tracking information than we do.

    I always assumed that the driving force in the US would be a commercial entity like Microsoft or Google forcing the rest of the children to conform or die. I like the idea of consumers and clinicians pushing for change, but I definitely think we can lean of the commercial groups as a source of technology development; they tend to have more money and resources.

    As always, you’ve provided some welcome enlightenment. Take care.

  6. Hi Col,

    You bring up some interesting points. I am not well versed in the idea of “open source”, but do agree that standards are influenced by vendor and personal bias. As I mentioned in my reply to Heather, the large technology based consumer software companies like Microsoft and Google will eventually play a role in formats used to control the flow of data. For all intents and purposes Google is currently the biggest influence on the world in which I would like to see healthcare move; the internet.

    I find the state of healthcare data, in the US anyway, in a ridiculous state of disarray. Maybe you and Heather are correct in your opinions that a grassroots approach is the way to go. Traditionally industry opinion is swayed by users of the product. I certainly don’t want to be talking about the same thing in 10 years.

    Thanks for stopping by,

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