US/UK summit on open health data

The culmination of our trip was the first US/UK summit on open health data.  The event was opened by Sec Sebelius and Andrew Lansley. After the initial round table discussion we broke into groups to look at prioritised areas that we could collaborate on. We will be writing these up but broadly these covered technical , patient and public participation and measuring clinical quality.  The energy and enthusiasm in the workshops was impressive and some really good bilateral work was going on.  We will kick off some work streams to deliver by Dec 2012.

I tended to dip in and out of the sessions to ensure they were all going in the same direction. I was really struck by a few ideas including work on a joint definition of quality and value, work on international indicator alignment, work on standards for using patient feedback and some great ideas around aligning registries. The technical work stream was particularly productive with the UK team led by Inderjit Singh being outstanding. More about this when we write it up.

Overall it has been an exhausting, stressful and intense few days, but also enormously rewarding. The UK team worked really well together and complimented each others skills and experience.

I look forward to organising a follow up - possibly in December in the UK ( weather permitting!)

Mark Davies

Outside The White House, Washington DC

Day two - Datapalooza

The second day of the Datapalooza has been equally interesting. Along with Sir Bruce Keogh and Mo Dewji, I had a number of meetings with clinical leaders in the US including Senator Bill Frist and Atul Gawande. The conversations focussed on the measurement of quality of care and the need to align those measures with payments systems. We discussed the challenges of producing meaningful measures at sufficient scale to have an observable impact on the wide tapestry of health care. 

We all recognised the shared challenge and the potential for closer cooperation in such things as defining quality and the collation of evidence. Even though the two health care systems are so different , they share the common challenges of systematically measuring quality in way that allows meaningful comparison and the need to  do more with less as resources become stretched. We discussed some of the methodology we use for indicator development and the need to describe an international consensus on an indicator pipeline.

 

Atul discussed different models of change management in complex health systems and described the need to generate reproducible innovation, so that the systems can learn from best practice in other areas.  He was particularly interested in the emerging role of CCGs in the UK. His work is very influential over here and his lectures and writing are well worth looking up.   Bill Frist took us through his vision for increased automation, decision support and data driven service redesign based on the use of open data and innovation. It was a compelling argument but I reflected afterwards on the ability they have to influence the dominant lobby groups in the states to such a view.

 

In the evening we attending a white house reception with Secretary Sebelius,  it was fascinating visiting such an iconic building even though I hadn't realised just how small it actually is.  I had a minor crisis and a short delay in me getting in as I didn't have the correct ID , which provided lots of opportunity for jokes at my expense. How many GPs does it take to get into the white house etc ...

 

The conversation ran late into the evening with charismatic leaders in information - Todd Park and Chris Vein.  Much of the discussion centred on the American  health system that is acknowledged to be facing unprecedented challenges and essential role that open data has in bringing about improvements.

 

We are well prepared for the US/UK summit tomorrow and I am looking forward to seeing how we turn all these interesting conversations into joint work streams.

 

Mark Davies

Day one - Datapalooza

I have seen lots of impressive apps eg:  iTriage, iBluebutton, Castlight Health  and  Symcat (written by a couple of medical students) etc I could go on.   What is striking about all of this is the level of innovation with the data.  I am left wondering how we stimulate such a community in the UK. It seems that the financial backers  are critical to doing this at scale.  I wonder what innovative business models would work in the UK? 

Attended the first day of the Health Data Initiative Forum (Datapalooza) with 1600 delegates in the Washington Convention Centre. What an amazing building!

Todd Park is an impressive leader and has really galvanised this industry in the US. This is only the third event they have had and already it's attracting some serious financial backers in the US.  Todd is quite a visionary and a nice bloke as well!   (maybe that's the secret)

We presented a session - myself , Sir Bruce Keogh, Tim and Debra El-Sayed. We got a great response from the audience with a lot of good questions.  They seemed impressed by what the NHS had achieved -especially in opening up data and Choices APIs. 

Looking forward to the reception tonight to do some more networking

Mark Davies

Choice vs participation

Attended an interesting reception led by Todd Park , USA chief technology officer yesterday. The room was full of health policy analysts, technology companies and venture capitalists .  I had an interesting debate on the differences between the US and the UK in terms of engagement of patients in their health.

Although a massive generalisation , in the UK compared with the US, patients tend to be less engaged in their personal health planning.  This is certainly something that I have noticed working as a GP.  It struck me talking to my US colleagues about choice and voice that we have some big cultural hurdles to overcome. Offering options as we do with Choose and Book is an important prerequisite but it isn't the same thing as 'choice' which requires a willingness and ability to act on those options.  US patients are compelled to be actively involved in their choices even for the 45 million who aren't insured and whose options must at a time of illness be terrifying. The stark economic realities of American healthcare put it at the top of the agenda for every american family. The effect of this is high levels of participation but at what cost!

 

Making the economics of health closer to the patients has to be the right thing to do , the trick is doing that without adding to the emotional burden of illness by worrying about what things will cost.  I am left feeling that continuing to expose GPs to the economic footprint of their clinical decisions, one step removed from patients,  is the right direction of travel.  It will be interesting to see how personal health budgets develop for those who wish to take the next step.

 

In the collective we behave very differently however. UK communities engage quickly with any change in service design that we perceive as threatening to the NHS.  We debated the origins of this apparent paradox.   My american colleagues concluded that the luxury of personal disengagement is paid for by the comfort of an unchanging and ever present NHS that will provide.  I am not sure it's quite that simple  but what is clear is that we have to consider these important emotional responses when considering how to reconfigure services to make them better, safer and more sustainable as well as the facts and the logic. 

 

Mark Davies

Washington sets the bar..

Our trip to the states couldn't be more timely as they have just published their government digital strategy.

http://www.whitehouse.gov/sites/default/files/omb/egov/digital-government/digital-government.html

It's a good piece of work that I suspect will set the direction for federal government over the next few years irrespective of who is in the Whitehouse. A key theme is the need to, as they put it...' innovate with less' . A concept that will sound familiar to a UK audience.  As funds are stretched tighter and the requirement to improve digital services becomes more pressing we need to look to share our capacity to develop systems and we will have to open up data to a variety of players to help us find meaning in information and understanding to complex problems. 

There are commitments in their strategy for state departments to open up APIs to useful government data sets with clear milestones. APIs (application programming interface) are the hooks that allows other systems to latch on and use the content.

The conceptual model describes three layers:

1. Information layer - both structured and unstructured information
2. Platform layer - describing the management principles around content  management , APIs etc
3. Presentation layer- the standards that will other services to be delivered across a variety of media.  

It has similarities to our own Information Strategy with a decoupling of data from its presentation to the public. This clarity offers us the opportunity to make the rhetoric of 'record once and use many times' a reality.

I am pleased to see the same important debates in the US about data security and confidentiality and the need to protect patient identifiable data.

If we lose sight of that - we lose everything!

Mark Davies

Off to Washington

On a wet Sunday afternoon I am setting off from Yorkshire on the long journey to Washington DC. Just before I set off I was able to check into the flight , print my boarding card, check my VISA exemption status and confirm the train times - in a matter of minutes. It couldn't be more different for patients trying to interact with the NHS!

It was a poignant reminder of the challenge before us - opening up the NHS to this kind of innovation. We've made some important first steps - open data strategy, information strategy, open government partnership- but we've a long way to go...

Last week I had a glimpse of the future at the NHS Hack Day - a great bunch of self confessed 'nerds' who achieved amazing things in 48 hours. They wrote apps for everyday problems in the NHS and seemed hungry for important challenges they could apply themselves to. They certainly kept their side of the bargain - we need to respond by opening up the data , opening up the standards and opening up the systems.

This might just be, as they say - 'the start of something amazing'

Mark Davies