Open Government – Pouring Sunlight over the Department of Health

Guest Blog – Stuart Carroll

“If people don’t know what you’re doing, they don’t know what you’re doing wrong”.  This was the legendary advice of the circuitous Sir Humphrey Appleby to the hapless Jim Hacker in the first ever episode of Yes Minister – Open Government.  It was advice the spineless Hacker would soon cogitate over when confronted with the choice between his principles or the venom of a cantankerous Chief Whip.  No prizes for guessing Hacker’s final decision.

Although many would argue that the creaky wheels of the Civil Service machine remain about as well-oiled as a BP Gulf of Mexico rig, the Coalition Government has shown little appetite to play out the farcical scenes of arguably the greatest comedy series of recent times.  This is particularly true in the case of the rejuvenated Cabinet Office, which has recently published its open data consultation and in doing so laid down a marker not to be remembered as the “Department of Administrative Affairs” of its time.  Under the focused leadership of Francis Maude, there is little doubt that the Cabinet Office means business and has a reformist agenda in its sights.

As part of the Government’s wider transparency agenda, the open data consultation follows the commitment by the Prime Minister to publish key data on public services, including GP achievements and prescribing, the performance of hospital teams in treating key conditions, the effectiveness of schools at teaching pupils across a range of subjects, and criminal sentencing by the courts.  Its terms of reference comprise six key questions:

  1. how can the Government enhance a ‘right to data’, establishing stronger rights for individuals, businesses and other actors to obtain data from public service providers;
  2. how can the Government set transparency standards that enforce this right to data;
  3. how can public service providers be held to account for delivering open data;
  4. how can the Government ensure collection and publication of the most useful data;
  5. how can the Government make the internal workings of government and the public sector more open; and,
  6. how far can the Government play a role in stimulating enterprise and market making in the use of open data.

For a consultation conferring such a radial and reformist set of objectives – after all, Maude et al are, at face value, proposing a significant change in the entire culture of government and all that goes with that – it is surprising, and somewhat paradoxical, that the transparency campaign has largely slipped underneath the political radar.  This might of course be the inevitable consequence of a shifting media focus that has included phone hacking, Libya, the London riots and, of course, Sally Bercow’s ignominious appearance on Big Brother (Order!  Order!).

The low-key nature of the consultation might also be because of the document itself.  With a vapid somnolence and 57 pages of text book Mandarin, the consultation document can hardly be described as a page turner and is probably best read with a stiff drink in your hand.  Indeed, some of the content is about as readable as a Shane Warne googly and about as comprehensible as a Colonel Gaddafi radio broadcast.  Yet despite the Britain’s Got Talent buzz for presentation and decoration, no one should doubt the central importance and weighty magnitude of this seminal consultation.  In the area of health, this is particularly important.

Although freedom of information has helped to improve the opening up of NHS datasets, there remains a significant problem with gaining access to data collected and collated in the right way and analysed in the right form; something fundamental to better healthcare and health policy, but also public accountability.  As part of my submission to the consultation, I will be highlighting some of the following issues about “open data”:

  1. Why does the DH seemingly not have a standard unit cost or reference cost for NHS Direct (the only publicly available source seems to be a Daily Telegraph article from 2009)?
  2. Why are some of the cost-effectiveness analyses and scoring algorithms undertaken by the DH and subsequently used to inform tender criteria and policy decision-making sometimes not published (or fully published) or placed in the library of the House of Commons?
  3. Why can it take upwards of 6 months to gain access to “publicly available” datasets such as cancer registries?  Why does “publicly available” data often entail a pecuniary fee?
  4. Why is a large part of the Health Protection Agency (HPA) surveillance data not published or made publicly available on request?
  5. Why do restrictive rules still apply often preventing one NHS provider to transfer patient data (with the patient’s permission) to another NHS provider?
  6. Why does the Health Resource Group (HRG) 4, which uses clinical coding (ICD-10 codes) and administrative codes about patient events to derive the relevant HRG, often return error messages when running through a dataset?

I will also be emphasising that in certain cases open data would not be in the national interest.  For example, the publication of pharmaceutical prices, although something that prima facie might seem instinctively reasonable, would be absolutely deleterious to the pharmaceutical industry and in turn the UK economy due to international price referencing.

 

A substantial segment of the world market references UK drug prices (estimated at 25% by the Office of Fair Trading), meaning manufacturers will typically be unwilling to lower their public list price in the UK.  Ensuring tender and volume prices are kept confidential is therefore critical otherwise pharmaceutical companies will defer or scrap UK drug and market access launches, which would have an inimical effect on jobs, UK investment and research and development opportunities.  Given that science and technology is the number one industry as part of George Osborne’s budget for growth, the consequences of “open data” in this sense would be economically debilitating and clearly against the economic national interest.  Sensibly, the DH and Treasury have so far reaffirmed their policy not to publish commercially sensitive pharmaceutical prices due to its likely negative effects on competition and the UK’s industrial policy.

The deadline for the consultation is 27th October 2011.  I encourage people to submit.  Don’t be fooled by its apparent greyness and monotony.  As with most things in Government, it is often the boring stuff that is most important and the finer details that can make all the difference.

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About Julia Manning

Julia Manning is a social entrepreneur, writer, campaigner and commentator. She is based in London and is the founder and Chief Executive of 2020health, an independent, social enterprise Think Tank whose aim is to Make Health Personal. Through networking, technology, research, relationships and campaigning 2020health has influenced opinion and action in fields as diverse as bioethics, alcohol, emerging technologies, fraud, education, consumer technology and vaccination. Julia studied visual science at City University and became a member of the College of Optometrists in 1991. Her career has included being a visiting lecturer at City University, a visiting clinician at the Royal Free Hospital, working with south London Primary Care Trusts and as a Director of the UK Institute of Optometry. She specialised in diabetes (University of Warwick Certificate in Diabetic Care) and founded Julia Manning Eyecare in 2004, a home and prison visiting practice for people with mental and physical disabilities using the latest digital technology, which she sold to Healthcall (now part of Specsavers) in 2009. Experiences of working in the NHS, contributing to policy development, raising two children in the inner-city and standing in the General Election in Bristol in 2005 led to Julia forming 2020health at the end of 2006. Julia is a regular guest on TV and radio shows such as BBC News, ITV’s Daybreak/ GMB, Channel 5 News, BBC 1′s The Big Questions, BBC Radio, LBC and has taken part in debates and contributed to BBC’s Newsnight, Panorama, You and Yours and ITV’s The Week. She is mum to a rugby-mad son, a daughter passionate about Shakespeare, and wife of a comprehensive school assistant head-teacher. She loves gardening, ballet, Zimbabwe, her Westies Skye and Angus, is an honorary research associate at UCL and a Fellow of the RSA.
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