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Making it happen – one currency of transparent, outcomes-based healthcare

August 12, 2010

Andrew Lansley’s White Paper sets out a challenging and profound shift in UK health. It is going to take a massive amount of energy, resolve and powerful, persistent leadership to make it happen. But getting it right promises to leave a fabulous legacy and a much better NHS.

I don’t mean the side-show about who commissions/buys the care. That bit is of interest to a small number of GPs, an even smaller number of journalists, and a lot of people who currently eat their sandwiches in PCT offices. Whilst that part of the document has excited those who like to twitter over lunches in Westminster, it is not where the action really is, or needs to be. The same small number of doctors will get involved as now, they’ll just sit in different offices, having the same meetings with broadly the same consultants (but the BMA will probably demand they get more money for doing so). Ho-hum.

No, the transformational, innovative change will be in making the NHS fully, truly and comprehensively outcomes-based – and ensuring these outcomes are the ones that are important to and understood by patients. Combining this with transparency will create empowered patients, who will exert market-forces on the whole of UK healthcare: there is not a single parent who would choose to have their child treated at a second-rate hospital, or by a second-rate doctor. And there is still a huge amount of mediocre (or worse) care suffered by patients.

But what has to happen to make sure this seismic shift occurs? One thing is certain: unless this is imposed on the current people and structures of the NHS, then it will not happen. Healthcare is all too often the last bastion of those who think they know best and nearly the only sector left where those who pay for and use the services are denied access to the information needed to make informed decisions about themselves. As the White Paper states, there should be “no decisions about me, without me“, to make this happen the Government will have to be more directional and “top-down” than perhaps is their natural inclination. We’ll call it a “nudge”, as currently this is more “politically correct”.

Ten thoughts and ideas for discussion:
1. Legislate to make it a fundamental part of commissioning – NHS commissioners should be legally mandated to demand, and providers to the NHS to supply, patient experience data, PROMS and clinical outcomes. It should be illegal to commission any care for NHS patients unless such outcomes data is provided. Think of it as a kite-mark of safety and quality.
2. Ensure transparency – whatever it takes. All the data described above must be made fully and instantly available to the public in an unedited, unfiltered way that makes it easy for users to compare one organisation against another. This means made available for others to mash-up and reproduce – not some mammoth excel file hidden away on an obscure DH website, six months after the event.
3. Comparison requires definition of national standards. All those seeking to provide NHS services will have to ask (and share the results of) a core set of questions using the same words and the same scales. Empowering patients and creating a market in healthcare needs “one currency of healthcare”.
4. This has to (eventually) apply to all NHS funded services. Sure, in some situations this will be harder than others, but there is no area of healthcare where one cannot ask patients or their carers for their experience in a systematic, robust way. Look what Wales has done across all of hospice care, arguably a more challenging environment than many, and the clear quality improvements already delivered.
5. Ensure patient need is the primary motivator and shaper of outcomes data, all other needs are secondary. If it works for patients then do it, whatever the challenges this poses to organisations and professionals. They will have to work around the needs of the patient – just like the best do now of course.
6. Multiple languages, multiple formats. A huge amount of effort needs to be focused on ensuring inclusivity. Everybody must be able to contribute to, to interpret, and to use patient reports and other outcomes data. Thus data (PROMS and experience feedback) should be captured and disseminated online and offline, mobile and paper, in hospital and from home.
7. Real granularity. A single, overall score for a location or care pathway is worse than useless. Averages hide poor performance, and make it impossible to identify and seek out excellence. This is about ratings and reviews by ward, department and individual teams. Would you book a hotel based on the average score for all Hiltons in London?
8. The DH/NHS must not try to do it themselves. NPfIT is just the latest example of how “big government” is not the answer. NHS Choices and Choose and Book are valiant efforts and have a role, but if they had worked there would be no need for much of the White Paper. Central government and the Department of Health need to nudge the system as described above – and then get the hell out of the way!
9. Maintain the profile and awareness of the need for patients to seek and contribute to outcomes data. Leaders and politicians should lead by example of honesty and transparency, highlighting unacceptable variation in NHS cost, quality and outcomes – and then telling people to search for the best. We need to see famous politicians rating and reviewing the care they and their families receive, and championing those pioneers who have already realised the benefits this brings to patients and staff.
10. Learn from outside. What are the best overseas examples in health? What works best in other sectors? Why is it easier to get views and peer-recommendations about 250 hotels in Barcelone than it is to get open, unedited information about 50 hospitals in the whole of the UK? This is not rocket-science, and anyone who tells you it is is either wilfully obstructing or shouldn’t have been asked their opinion.

Andrew Lansley and his team are right: empowering patients, focusing everything on outcomes, and aggressively ensuring transparency will change the NHS forever. It is necessary, achievable and well overdue.

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