The goal of the Nicholson challenge can “only be achieved by making fundamental changes to the way care is delivered”, the commons health committee concluded last month. This is a sentiment that appears to be shared quite broadly.
One of the difficulties with the challenge is its framing in primarily cost terms, which results in a bias in the choice of potential solutions. Achieving “fundamental change” usually requires much more than setting a cost target and an efficiency goal. It is neither surprising that “salami-slicing” is the path many are taking, nor that there is concern about where this path will lead.
The consensus is that health service reform should put the emphasis not on mere cost but on value – that is, on patient outcomes relative to costs.
This approach, known as value-based healthcare, has not gone unnoticed in England. It is recognised, implicitly at least, in the white paper, the outcomes frameworks, as well as in the recent consultation paper on public health outcomes. There seems to be no shortage of potential outcomes to measure, the missing link is to focus reforms around improving the most appropriate outcomes: those with the greatest meaning to clinicians and their patients.
As it happens, for many diseases, outcome measures have already been established. Leading clinicians have defined the various possible outcomes, and providers have for years been sending their outcomes data to disease registries and clinical audit databases. The UK has 60 registries and audits as part of the quality accounts, and many more besides. The aim, surely, is that the data and any analyses that emerge from it, should be made transparent and available to all. But progress towards realising that aim remains painfully slow; with only a few registries publishing the data on provider performance in a fully transparent way.
Our work with Swedish disease registries, the world leaders, has shown what a wealth of findings registry data can produce: league tables of hospitals, the efficacy of different treatments for the various patient segments, and the cost-effectiveness of these different treatments. The Boston Consulting Group’s research has shown how these registries, by making public all outcomes data, have increased adoption of best practice.
Our research also shows that the UK has similar building blocks in place to Sweden: a broad set of existing disease registries, a national patient identifier system, and a legal framework for using patient data while protecting privacy. So why is the UK lagging so far behind, and how could the NHS better exploit these data assets?
Several issues arise here. First, good disease registries do not come free, and the current funding level is not commensurate with their potential return. Our work showed a clear business case for investing in registries, and the Department of Health should fund them according to their potential return.
Second, this higher level of funding should be more explicitly linked to the level of transparency needed to drive change. The clinical associations striving to lead their clinical colleagues towards greater transparency would have the option to apply for these higher levels of funding which could be awarded conditionally on meeting the level of quality, coverage and timing of the desired transparency destination.
Third, each registry has to wrestle with various problems beyond funding: choice of IT platform, intellectual property issues, ensuring the reliability of data, anonymisation and standardisation methodologies, for example, as well as how to best engage clinician groups to support transparency. Since many disease registries share many of these problems, greater coordination and learning between registries would be a boon, helping to resolve the problems collectively and rapidly.
With so much to gain for patients and the service, one helpful way forward could be to appoint a “registry tsar”, with funding proportionate to a proven return, who would help registries to approach full transparency faster.
No matter how the Health Bill turns out and no matter what configuration a new-look NHS system takes, there can be tremendous value and credibility to derive from candid, high quality outcomes data.