In a recent post I worried that the big wigs at the Institute of Medicine (IOM) would be underwhelmed by my contention that one of the main – and perhaps the most important – functional requirements to get more information used in clinical practice is trust in the information. I was worried the polysyllabic crowd at the Roundtable would want to hear brilliantly complex descriptions of technical requirements, taxonomies and interoperability standards. Thankfully they were brave enough to see the world for how it is.“How it is” is best exemplified by the oft-repeated fact that it takes, on average, 17 years for established clinical knowledge to become a routine part of clinical practice.
Seventeen years. That’s a long time.
Sometimes being able to reduce complex medical knowledge to the size of a tweet can make it all the more powerful, but I find the opposite to be true with the “seventeen years”. It’s not a new fact and yet few healthcare leaders seem willing to get underneath it, understand why it’s happening, and, quite frankly, be ashamed that what they do, week-in week-out, to people that they sell their trust to is probably hopelessly out of date.
Over the next few weeks, I hope to share some of the fascinating presentations from the Roundtable, but I thought I would pull together some of the big themes in this post. This is a self-selected list, infused with personal biases, based on what I can remember from the day without looking at my notes – I find this approach a powerful test of what really mattered or resonated with me.
Although there was a strong focus on IT systems, the group were smart enough to realise that IT is just a tool to meet a clinical need. However, one view that floored me was from Steven E Waldren who contended that electronic health systems (EHRs) have been designed for “business automation” rather than clinical or efficiency ends. He used this contention as the basis for why most EHRs have awful user interfaces for clinicians. His view is that healthcare as a profession needs to define what standards it wants EHR providers to meet and then let them compete and innovate. He has put his money where his mouth is (always a good sign) and has created some standards that he offered to make open source so that others can contribute.
This idea of an openly accessible central source was also applied to clinical knowledge. There was significant desire in the room to have a more consolidated body of knowledge rather than the current situation of numerous guidance procures, many producing conflicting guidance. A centrally maintained suite of knowledge could also be encoded in a manner that complies with the standards described above so that any EHR provider could use it.
I found this dual vision of clinically-focussed EHR standards and consolidated knowledge compelling, and it made me wonder if England’s National Institute of Health and Clinical Excellence (NICE) has it up its sleeve. I’d be mighty impressed if they did, but it seems unlikely for two reasons. First, NICE have shown little, if any, understanding of how to make their information useable, as evidenced by the publishing of humongous PDFs that are almost impossible to wade through. And secondly, the near-criminal handling of taxpayers’ money in the National Programme for IT has undoubtedly killed any appetite for centrally mandated IT standards for years to come as evidenced by the recent information strategy that advocates more localism.
The tension between national standards and locally-endorsed information reared its awkward head repeatedly, partly due to my insistence that doctors are more likely to follow the latter over the former (I discussed this in my recent post about trust). My sense was that the room was divided, and, although I started the day being a passionate believer in the need for local endorsement, by the end I had tempered my view. This was partly due to the eloquence of James Walker, the Chief Medical Information Officer of Geisinger Health System who argued that in light of unjustified variations in care, doctors are simply going to have to accept that some clinical practices can be standardised country-wide to the point at which they will need to explain why they’re varying (Betsy Humphreys, the Deputy Director of the National Library of Medicine nodded sagely as he said this). This is less likely to happen for socially-complex, co-morbid patients but there really is no reason why it can’t happen for more straight-forward patients with a single condition. It made me realise that national and locally-endorsed content need to play side-by-side, depending on the circumstance.
One of the problems with enabling local doctors to amend content is who then has responsibility for what it says, including keeping it up-to-date. I believe this to be one of the most under-appreciated issues in the NHS and I was pleased that Blackford Middleton not only echoed my belief but also made his employer take it seriously. Blackford is the Corporate Director of Clinical Informatics Research and Development at Partners Healthcare System, and is doing some astounding work to create solutions for how knowledge is managed (what I call soft-wiring knowledge). Part of this includes being clear whose neck is on the line if the content is either wrong or out-of-date. Being able to name someone for this role is vitally important but in my experience, while many doctors want to have their two cents on what should be done, few are willing to risk their necks.
Carl Dvorak seems to have a neat solution for necks on lines. He’s the Executive Vice President of Epic Systems, an EHR provider. He described how their users are being encouraged to share local protocols so others can consider them in their practice. A condition of sharing the information is that you have no responsibility for it if another local health economy adopts it. I liked the sound of this, although it sounds worryingly close to the NHS’ “do once and share” initiative, which, although led to a number of interesting pathways being shared, had, in my view, insufficient editorial oversight to make the information adoptable. It would be interesting to see how often the information shared in Epic is used and whether adopters offer feedback to the creating organisation.
The assumption that high-quality care will reduce the overall cost of care was repeated a few times. There is very little evidence to support this, and, in fact, there is an excellent study by the Health Foundation that shows otherwise. My experience in the English NHS is that local health leaders are scared of introducing high quality care without first understanding the cost implications. I have heard the same for local health leaders in the US. I didn’t feel this was sufficiently appreciated in the room, with few participants sharing experiences of how much money their knowledge initiatives cost and saved local health economies. Blackford was an exception. When asked by Peter Bonis, the Chief Medical Officer of UpToDate, how much money his work would save he said 7.5% of the annual healthcare budget. The answer sounded facetious but he’d truly modeled it – and 7.5% is a cool US$150bn per year, he says.
Big data made an occasional guest appearance but Stephen Spielberg directed (sic) the discussion back into reality by sharing his experience from the Food and Drug Administration of the variations in how allegedly standard clinical terms are used between EHRs and localities. The variations makes it exceedingly problematic to draw concrete conclusions. It was the old garbage-in-garbage-out rebuff offered by many people that understand the true workings of databases and observational data, and was a welcomed shield from the kind of hyperbole that big data seems capable of stirring up.
On the periphery of the discussion was the idea of value – getting the best care for a specified population. I was quite surprised by that, given that the US is seen as the land of get-whatever-you-want-as-long-as-you-can-pay-for-it, but it seems that these healthcare leaders, at least, were willing to stare the elephant straight in the face (the elephant being healthcare expenditure reaching almost 18% of GDP). I couldn’t help feeling that this could have been more central to the day’s discussion, but perhaps it will in the follow up work.
It was a stimulating day and I was honoured to be the only non-US person present. The one thought I was left with was why this kind of meeting – with its clear sense of purpose, ability to draw in leading figures from around the country, and desire to pull together key next steps – is not happening in England. Somehow the idea of value- and science-driven healthcare has been abdicated to NICE while the small, insular and strangely impenetrable health policy community just doesn’t seem to have the kind of real-world experience that the IOM were able to get round a table. Of course, action speaks louder the words so it’ll be interesting to see what output and actions are derived from the day’s discussion but I was left encouraged and hopeful.
Competing interests: The IOM paid for my flight to attend the meeting.
This post was first published on my original blog, Optimising Clinical Knowledge, and co-posted on BMJ Blogs.