Can open data spark long-awaited change in the NHS?20 July 2012
The NHS remains our national religion and the doctors its clergy', but can data spark a reformation in the balance of power? Photograph: Christopher Furlong/Getty Images
The coalition government has made transparency and open data a defining theme of its agenda and has set out its ambition for the UK to become a world leader in informatics and healthcare data management.
The prime minister has pledged a "complete revolution in transparency", with the raw data that will allow people to analyse the performance of public services being made freely available.
Ultimately, though, the chief barrier within the health service is culture, not kit. Years ago Rudolf Klein said society had stopped thinking of doctors as high priests and started to consider them more as mechanics, more like the technicians of your local garage than the miracle workers of your local church. In fact, in the main the NHS remains our national religion and the doctors its clergy: can data and information spark the long-awaited reformation in the balance of power?
Publication of clinical outcomes has helped improve the quality of healthcare and many leading NHS providers are developing sophisticated IT systems to manage performance. Reform is working with the Cabinet Office and PA Consulting on a series of events to explore this theme and on 19 July held a breakfast meeting with Earl Howe, parliamentary under-secretary of state for health on the topic of informing people; empowering patients.
Howe made it clear that the open data white paper and the Department of Health's information strategy make publishing of performance data mandatory.
Data about organisational performance can have a transformative effect. As Reform has shown in numerous case studies, high performing systems use every possible channel to care for patients – a dedicated website enables them to browse for information, they can view lab results online through a secure server on the same day as the test, receive email reminders about appointments, drug dosages and more, book appointments online, by email and over the phone, and email or call doctors, nurses and pharmacists with questions.
At Kaiser Permanante and the Cleveland Clinic in the US, to name just two examples, doctors are also benchmarked against each other on clinical indicators, from how good they are at monitoring their patients and reaching out to them through to the outcomes of their treatments.
The opportunities of "big data" groups are considerable. For example, predictive risk modelling can have considerable benefits. In healthcare as in other walks of life the 80:20 rule applies: 80% of the money goes on 20% of the people.
In the US this summer I learned about how McKesson, a global health technology company, won a four-year contract for the Illinois Medicare budget. The first thing they did was run the numbers. They audited terabytes of government data – about patient referrals, treatments and payments – looking for patterns. From this they were able to identify those who were ill and those most at risk of getting ill.
Then they contacted each citizen to verify this and assigned them case managers: at-risk patients received intensive preventative care; "frequent flyers" were carefully monitored with regular calls and checks, visited at home by social workers, given advice about diet and exercise, treated in local clinics rather than the emergency room, and so on. Over four years from 2005-2009, McKesson saved the government $569m (£362m) and improved the quality of the care.
This shows that compassion and technology aren't necessarily incompatible; they can be mutually reinforcing. But there are further spin-offs. Aggregating this kind of information will enable us to understand much better which clinical therapies deliver most value. In this, there are, as PA's Colm Reilly explained at the meeting, growth opportunities for the UK's life sciences industry.
So far, progress in the NHS has been slow. In 1858 Florence Nightingale penned a "Proposal for Improved Statistics of Surgical Operations", but only in 2006 did the Society of Cardiothoracic Surgeons start to make their mortality data publicly available. They were pushed into doing so by the president, Bruce Keogh, now medical director of the NHS.
Since then, raw data for individual surgeons has been openly displayed online against a mortality range based on patient characteristics. No other speciality has managed to do the same. Veena Raleigh, from the King's Fund, pointed out the paucity and integrity of clinical information about care quality in general practices and community services is worrying. A recent BMJ editorial also called on the royal colleges and the medical societies – naming and shaming them – to show leadership. "What are you doing?" asked its editor, Fiona Godlee.
There are legitimate reasons for caution, of course. It is essential that data is of a high quality, that there are high standards, that the data is secure (Kaiser Permanante's My health manager patient portal is set up with higher security than most online banking sites), and that it is protected not only with good protocols but also good governance.
If it is to do so, not only will the medical profession have to let go: patients will have to get more involved. We have to engage the public with the simple truth that the health service cannot succeed in the future unless users and citizens recognise their own role in helping those services do more with less. We have to make our own efforts, whether it is looking after our health or managing our own conditions.
We also need to be willing to share data about our lifestyle and health conditions, but fear holds people back. Simon Eccles, a doctor, suggested the following question: "would you mind me sharing information about your health with my colleagues if it would save your life?" Two reports published by the Health Foundation on 19 July – When doctors and patients talk and Helping people share decision making – add to a growing body of research. If information is power, then shared information is shared power.
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