Preserving health data integrity

How valuable do we really think health data is? How seriously do we take our responsibility to preserve the integrity of our health data?

Probably not nearly as much as we should.

Consider the current situation of most clinicians or organisations when purchasing a clinical EHR system. What do they look for? Many possible answers are obvious, but there is one question that I suspect very few are asking. How many consider what data they will be able to export and convert to another format, preserving the current data integrity, at the end of the typical 5-10 year life span of the application? Am I wrong if I suggest it is not many at all?

Despite all the effort that we clinicians put into entering detailed data to create a quality health record we don’t seem to often consider the ” What next?” scenario. How much and precisely what data will we be able to safely extract, export, transfer or convert into the next, inevitable, clinical system? Ironically, we are simultaneously well aware that clinical systems have a limited technical life span.

Any and all of the health data in a health record is an incredibly valuable asset to the holder, to the patient (if these are not the same entities) and to those downstream with whom we may share it in the future – in terms of $$ invested; manpower resources used to capture, store, classify, update and maintain it; and not least the future value that comes from appropriate and safe clinical decisions being made upon the integrity of existing EHR data.

Yet we don’t seem to consider it much… yet. However, as more clinicians are creating increasing amounts of isolated pockets of health data, we should be thinking about it very hard.

Every time we change systems we put our health data at risk – risk of absolute data loss and risk of possible corruption during the conversion. The integrity of health data cannot be guaranteed each time it is ported into a new system because current methods always require some kind of intervention – mapping, transformations, tweaking, ‘cleaning’, etc. Small errors can creep in with each data manipulation and which over time, can compromise the safety and value of our health data. On principle we know that the data should not be manipulated, but being limited by our traditional approach to siloed EHR applications, we have previously had little choice.

We need to change our approach and preserve the integrity of our health data at all costs. After all it is the only reason why we record any facts or activity in an electronic health record  – so we can use the data for direct patient care; share & exchange the data; aggregate and analyse the data, and use the data as the basis for clinical decision support.

We should not be focused on the application alone.

Apps will come and go, but we want our health data to persist – accurate and safe for clinical use – beyond the life span of any one clinical software application.

I’ve said this before, but it’s worth saying many times over:

It’s. all. about. the. data.

One of the key benefits of the openEHR paradigm is that the data specifications (the archetypes) are defined independently of any specific clinical system or application; are based on an open EHR architecture specification; and are publicly available in repositories such as the Clinical Knowledge Manager. It means that any data that is captured according to the archetype specification is directly usable by any and all archetype-compliant systems. Plus the data is no longer hard-wired into a proprietary application so that it is orders of magnitude easier to accurately share or transfer health data than it has before.

Clinical system vendors that don’t directly embrace the archetype-technology may still ‘archetype-aware’, and can choose to use the archetype specifications as a means to understand the meaning of existing archetyped data and integrate it appropriately into their systems. Similarly they can map from their non-openEHR systems to the archetype specifications as a standardised method for data export and exchange.

The openEHR paradigm enables potential for archetype-compliant systems to share the same archetyped data repository – along the lines of an Apple platform ‘plug & play’ approach, with applications being added, removed or updated to suit the needs of the end-users, while the data persists intact. No more data conversions needed.

Adapted from Martin van der Meer, 2009

Now that’s good news for our health data.

What is the vision for an Open Health platform?

Came across a tweet this morning from Tim O’Reilly (@timoreilly) linking to an article by Mark Drapeau (@cheekygeeky) entitled ‘What is the Vision for Open Government Entrepreneurship‘.

The first paragraph in particular caught my eye:

Tim O’Reilly often explains Open Government, or Government 2.0, as “Government as a Platform” on which citizens build things for each other and participate in their government (rather than treating it like a vending machine).  The co-founder of Personal Democracy Forum and techPresident Andrew Rasiej has a similar notion that he terms WeGovernment.

And then following the link to Tim O’Reilly’s 2009 article, “Government as a Platform”:

…But as with Web 2.0, the real secret of success in Government 2.0 is thinking about government as a platform. If there’s one thing we learn from the technology industry, it’s that every big winner has been a platform company: someone whose success has enabled others, who’ve built on their work and multiplied its impact. Microsoft put “a PC on every desk and in every home,” the internet connected those PCs, Google enabled a generation of ad-supported startups, Apple turned the phone market upside down by letting developers loose to invent applications no phone company would ever have thought of. In each case, the platform provider raised the bar, and created opportunities for others to exploit.

There are signs that government is starting to adopt this kind of platform thinking.

It got me wondering… When will the eHealth community start thinking in these terms?

  • Open Government; Open Health.
  • Government as a platform; Health as a platform.
  • A cohesive platform approach rather than fragmented proprietary silos.
  • Opportunities and innovations as spin-offs.

I wrote in a previous post about the concept of a universal health record based on an open, standardised architecture as the basis for a cohesive and sustainable approach to recording and exchanging health information, health data aggregation, support for knowledge-based activities such as clinical decision support and comparative data analysis. I also posted, rather naively perhaps, about the openEHR platform in which I work, as an open source health equivalent of the iPod/IPhone platform.

I’m sure most won’t accept a Microsoft-, Google- or Apple-equivalent as the platform and will push for an open option. And whatever you do, don’t confuse open source software applications with the concept of an open source platform. An open platform can enable all software developers to play, no matter what their philosophy – ‘what is under the hood’ is open source and standardised – and that is a key differentiator.

But you get the idea, I think – the underlying notion of an Open Health platform is sound. Other knowledge domains are embracing the concept and way ahead in terms of innovation in this space.

When will the health domain  start to engage in the same open-minded and innovative manner? Only then can we start to think in terms of Open Health Entrepreneurship as mentioned in @cheekygeeky’s article.

Time for a revolution, me thinks!