'The secrecy of information in the NHS is absurd'

The Department of Health’s information strategy, The Power of Information, finally landed in May and is clear about aspiration but short on specific actions. The National Programme appears to have left ministers and officials gun-shy of making specific commitments around hospital IT. I have a strong suspicion that if they hadn’t spent so long writing it, they would have preferred never to publish. 

At the heart of the document is a real passion, encapsulated by a quote from the NHS Future Forum that “not sharing information has the potential to do more harm than sharing it”. This is the crucial point when we consider the harm done to patients every day from medicine errors, forgotten allergies, missed diagnosis and breakdowns in the care pathway caused by a failure to share information. This document may be short of direction, but it reeks of frustration at the absurdity of a 21st century NHS that keeps its performance secret and relies on the movement of paper and “memory-based care”.

Providers will need to respond to the promise that electronic access to your own care record will start with GP records by 2015 and extend to social care. Hospitals, which have avoided all mention in this section, should not be too complacent. If your commissioners have been forced to provide this level of transparency, why would they not demand it of their providers?

The perceived failings of a central national programme are replaced by a commitment to “connected information” both in an identifiable form for clinical care and anonymised for measuring clinical performance, planning, research and service improvement. There is little recognition of the complexity of this, either in the avoidance of duplication in a linked record or the fact that a number of systems don’t hold information in “data” formats but as free text.

The strategy proposes that areas in social care be digitised without addressing payment or incentive questions. While it flags a potential saving from the elimination of paper in the NHS of £200m, it gives no estimate for social care.

The strategy gives commissioners a green light to insist on comprehensive data sharing between providers and themselves, but an informatics partner who can anonymise data will be required for a more sophisticated dataset than SUS. The whole health and social care system will need to review the aspirations and determine who will commit investment – a fragmented approach is unlikely to lead to significant progress.

For providers, it seems likely the tolerance for failing to use the NHS number and recognised data standards will end. The NHS Commissioning Board is encouraged to use regulation or enforcement if standards are not adopted in reasonable timescales, and the Care Quality Commission and Monitor are both encouraged to take an interest.

Public access to clinical performance information to drive quality is restated as a priority and will be based both on clinical outcome data and increasingly on rapid turnaround user feedback. It remains to be seen whether the NHS will respond more positively to the attempt at transparency. 

Some will find all this information hard to access or understand. The strategy suggests that the NHS Commissioning Board consider publishing guidance on support, advocacy and information services, but doesn’t say these services will actually be commissioned.

A “next generation” NHS Choices is proposed as a single portal through which the public can access accurate and reliable healthcare information. When combined with an enhanced role for the NHS Information Centre as the “national focal point and key resource for health and care information”, there is a risk that this “nationalised information service” will lean towards monopolistic production rather than liberating the data. 

The key message for provider chief executives here is to ensure you invest in systems that capture data to industry standards and you have a rigorous approach to data quality when it is first captured, because the opportunity for retrospective clean-up is going to disappear. 

Finally, there is recognition that any strategy to extend information and technology will need better leadership, qualified experts and an extension of information skills to the wider workforce. The strategy advises that “every organisation should identify a clinician or care professional responsible for organising information in support of better care” in line with BCS Health’s call for every organisation to have a chief clinical information officer. Boards should also ensure they have a nominated information lead and that all of the board members are receiving the information they need to fulfil their duties and have the skills needed to interpret the information.