What is an EHR? Most currently working within eHealth circles will have a ready answer, and the classic response will be something like "an EHR is a software application that is used by clinicians for provision of patient care". But think about it for a second...
What do we want from an electronic health record? It's not actually the application or the user interface or the workflow, but a record of health information in an electronic format.
And so what of the health information itself? What is it? What do we want? What should we want?
Let's work with these definitions: Data are the computable facts; while health information is the data after it is processed, organized, structured or presented in a given context so as to make it useful.
We definitely want health information that...
- Is available at the right time and the right place to the right person.
- Is accurate, detailed and of high quality.
I don't think there is much disagreement on these two points. How about these next suggestions?
We should also want health information that...
- Is a lifetime health record - cradle to grave. Health information that can be accumulated over time, aggregated from many sources to inform better care for ourselves, our patients and loved ones.
- Can be created in one place or by one provider and shared with others so that the meaning of the data is preserved and accurate.
- Can be dynamically and actively used - consisting of structured, atomized data that we can re-use and combine in different ways to improve our health and wellness. Documents or PDF's of our health information are useful as part of a passive record, but they are effectively a dead end - we can't do anything useful with big blobs of text except read them.
- Is not locked in to a proprietary vendor database; data should be in an open, non-proprietary format.
- Is a continuum of our health information across all aspects of healthcare and related activities, not fragmented silos of data artificially segmented for personal, clinical or secondary use purposes.
- Can be accessed via an EHR, EMR or PHR, SEHR or ICEHR - pick an acronym, any acronym!
- Can be accessed independent of any specific organizations, providers and geographical locations.
- Has had minimal transformation or manipulation. Keep in mind the Chinese Whispers effect! There is significant risk that important data can be lost or lose integrity with each data migration to a new software application or transformation between disparate systems.
It is a commercial reality that we continue to develop EHR applications in the traditional manner, building the greatest and 'best of breed' clinical software applications, with each EHR vendor doing it in their own proprietary way, as 'rugged individuals'! The resulting software usually has a rich functionality and a great user interface. It is likely that it does a fine job locally in the clinic, hospital or network on which it is installed. But what about regionally, nationally, internationally? Is it still working well if we take the big picture view? Sure, our EHR applications are full of data, but the data is isolated, fragmented, and limited in its use.
There is no doubt that all over the world, the health IT community are finding it unexpectedly hard to exchange health information between different applications - the effort and resources that are being poured into policy, research and pilots for health information exchange is enormous. Progress is glacially slow. If we want to exchange PDFs and documents, then we are doing well, but if we want our software to be able to do more than display text, to do clever things with our health information, then our data requirements are much more complex. If we want that data to be able to be shared, used in multiple applications then the current approach requiring data transformations and messaging paradigms won't be sustainable
Interestingly, the further we go down these paths many are realizing the need to change our emphasis away from the EHR application and towards the data. Back in November 2009, Clay Shirky wrote:
"This ability to separate data from transport and applications from data is the essential pre-condition for innovation — a group that has a valuable new idea for presentation of data for clinical use should not also be forced to think about the data encoding or the way the data are transported. Groups working on new data encodings should not be tied to a pre-existing suite of potential applications, nor should they have to change anything in the transport layer to send the new data out, and so on."
The bolded text, above, reflects my emphasis on an important statement. Confirming this approach, as recently as this week, Kibbe & Klepper also called for separation of the data from the applications and from the transport layer.
Change the focus to standardized, data-driven eHealth
So, innovation requires a new approach to data; a changing emphasis from application- or message-driven to data-driven eHealth. If we also insist on an open and standardized approach to health data specifications then we will be able to realize many additional advantages:
- A strong foundation of shareable and re-usable computable clinical content definitions on which to build coordinated and cohesive applications, messages, clinical decision support programs, and research activities. If we use common, standardized data definitions then the tasks of eHealth become orders of magnitude easier. Content definitions are created and agreed as the content is already specified and the processes become more generic
- An unambiguous and detailed understanding of what each piece of data means so we can do 'stuff' with it - a tight semantic 'handle'.
- A powerful enabler for managing the complex requirements involved in health data capture, integration, aggregation, inferencing and sharing.
- A continuum of our health information, independent of vendor, provider or organization - the real potential for lifelong health records, for the first time.
There is no doubt that this approach is orthogonal to the status quo and it will be challenging to many for logistical, financial and political reasons, but can we really afford to ignore this?
According to the European Commission's seminal 2009 report entitled "Semantic Interoperability for Better Health and Safer Healthcare: Research and Deployment Roadmap For Europe" (PDF, p16), standardizing the capture, representation and communication of clinical data requires three components to represent meaning: a generic reference model for representing clinical data, agreed clinical data structure deﬁnitions and clinical terminology systems. Potential standardized data definitions proposed are openEHR archetypes, ISO/EN 13606 Part 2 (which are simpler archetype structures), HL7 templates, generic templates and data sets. Standardization of data is not 'pie in the sky' but an approach that has had significant research and implementation experience, particularly in Europe.
So, to consumers, clinicians, organizations, researchers and governments, the call should not only be "Gimme my damn data!" but give me standardized data that is application- and message-independent. Then we can actually start to use and re-use our data, not only as a detailed record of current and past health conditions, events and activities, but dynamically and pro-actively to inform and promote our future health and well-being.