In a bid to improve the operation of the NHS, the Department of Health is publishing reams of medical performance data and anonymised patient information. Tim Fish reports on a trailblazer in the government’s open data agenda.
The government believes transparency and open access to public sector data will increase accountability and help providers to improve public services. The Department of Health (DH) has led the charge in Whitehall, embracing open data policies designed to allow patients to choose their service provider, and publishing performance data in a bid to drive up service quality standards. Indeed, the DH’s experience can offer other departments lessons in how to use data to improve service quality and user experiences.
The Open Data White Paper, published in June, set out the Cabinet Office’s aim of increasing transparency across government. The coalition wants to see public data uploaded to the web in ways which allow people to reuse it and combine it with other datasets – something that requires publication in a machine-readable format, and free of restrictions on its use and redistribution. Each department has now published its own open data strategy, outlining its commitments to release data over the next two years via the new data.gov.uk website.
Meanwhile, an Open Data Institute has been established (see p15) to help the public and private sectors realise the full potential value of open data, and new guidance will be issued to the Information Commissioner’s Office to reinforce the presumption that data should be published unless there are strong reasons against doing so.
However, the white paper admits this agenda is currently in its infancy in Whitehall: much of the data that government holds is not readily accessible, doesn’t conform to common standards, and is not of a high enough quality to be used. This is where the DH comes in – for the department has been working on these issues for decades, ever since John Major’s administration started publishing NHS league tables.
Tim Kelsey, DH’s national director for patients and information – who, in his previous role as the government’s transparency director, masterminded the white paper – tells CSW that while the league tables were “crude”, the initiative “fired a starting gun for the creation of a more transparent and intelligent health service.”
In 2000, the new Labour government’s NHS Plan pushed transparency further – but it was fast overtaken by events. Kelsey says the inquiry into paediatric cardiac deaths at the Bristol Royal Infirmary was a “watershed” moment with “very profound” repercussions, because it became clear that with “greater transparency and better use of data, fewer of those babies would have died at the hands of those negligent and incompetent surgeons in Bristol.”
“The idea that NHS actually harmed or is capable of harming its patients was something which many people hadn’t quite thought of, and remains for most people very difficult to get their heads around,” he adds.
Along with the clinical and political events driving greater transparency, there was a third factor: Kelsey himself. With two associates, he established Dr Foster – subsequently bought by DH – to turn raw data into meaningful public information, strengthening internal competition on service standards and external scrutiny.
The combination of the NHS Plan, the Bristol Inquiry and the arrival of Dr Foster spurred the clinical community into action. In Kelsey’s opinion, they were concerned that unless they took the lead in transparency, then either the politicians would introduce their own targets, or the media would publish their own analysis and NHS bodies would lose control. In the early 2000s cardiac surgeons began to publish their performance outcomes, and since then ever more datasets have been released. Kelsey believes access to these kinds of datasets has contributed to recent improvements in NHS services, because patients and doctors have been able to compare outcomes.
The open data model Kelsey is now pursuing is intended to deliver benefits in six areas: accountability; choice; efficiency; service quality; data quality; and economic growth.
On the first point, accountability, he believes the availability of outcomes data makes institutions and clinicians more accountable to local people and results in higher standards. “The quality of the debate around hospital reconfiguration, service redesign, has massively improved because of the availability of evidence on which to base those kinds of arguments,” Kelsey says.
Second, he argues that publishing providers’ performance data will foster patient choice, enabling people to choose the provider best able to treat them. If patients start to abandon poor-quality providers then they’ll have to up their game, he says, driving up quality across the board.
Third, the provision of management information and business intelligence to the service providers is expected to improve efficiency. Doctors will be able to see how their efficiency compares to other people’s, and Kelsey says that they will enter into an “honourable competition” with their peers to improve, driving better resource allocation and value for money.
Fourth, sharing data can drive improvements in the quality of services and improve outcomes across an entire medical or surgical category. According to Kelsey, the cardiac surgeons who first published their data almost a decade ago have seen reductions in mortality rates in core heart surgery procedures by as much as one-third.
Kelsey says that the fifth and probably “the most important” area is that transparency has the “rather weird, brilliant side-effect” of improving data quality. The source of the data is often the clinician or surgeon, and if they are going to be compared with colleagues then they want those statistics to be accurate.
The sixth benefit is economic growth, whereby the release of anonymised patient records will allow the private sector, charities and other organisations to reshape public services and to use the information for research into health conditions.
However, Joyce Robins of campaigning group Patient Concern tells CSW she’s concerned that, despite efforts to anonymise data, the release of aggregated patient records information could lead to people being identified. “You can’t completely anonymise [the records] because if you do [the data is] not much use,” she says. The data needs to include date of birth and region if it’s to have any value, she says.
However, Kelsey says that this claim is “complete nonsense”: a combination of safeguards under the Health and Social Care Act 2012, the Data Protection Act and a government review offer “a standard of sanctity around patient confidentiality”, he says. Only staff with a clinical relationship with the patient will ever have access to patient-identifiable information, he says: “There is no question about that.”
On 1 April, a new NHS Commissioning Board and a Health and Social Care Information Centre will take up their statutory duties, including responsibility for managing and publishing data. The move will result in a clearer separation between the NHS and the DH, which will become more of a policymaking department.
Rachel Neaman, deputy director of digital channel strategy and publishing at DH, tells CSW that the Health and Social Care Information Centre will have a “key role” in releasing data sets and will act as “a giant data warehouse” where all the data comes together.
However, Neaman expects other organisations to take on most of the burden of analysing and communicating this raw data to the public. The government is not going to spend public money developing interfaces and apps, she says; though she concedes that few others have done so to date, arguing that as yet “the market is probably still quite young”.
Between now and April, Neaman expects more organisations to take the initiative and use the data to provide interfaces that will help the public make choices about health treatments without “the big stamp of government on them”.
The reason the NHS has been able to make these advances is because it is has fully engaged the healthcare community, argues Kelsey. “The main lesson is that this is not something that can be done by Whitehall departments on their own,” he says. Communities need to be engaged – and then, with all these “voices” coming together, Kelsey believes departments will be able to make “swift progress”.