Data collection: Big Brother isn't watching you

Sixty years ago, the government distributed leaflets to the public explaining what they could expect from the new NHS: "Everyone - rich, poor, man, woman or child - can use it or any part of it." Today, that founding principle has not changed, but "everyone" has. Britain is more ethnically diverse than could have been imagined at that time.

But information has not kept pace with these demographic changes and most health and healthcare-related datasets have not included an ethnic dimension. Such information is critical, and while the government is committed to the idea of an equitable NHS, gaps in healthcare data about ethnicity have been significant. However, changes are in the pipeline.

The Cabinet Office's equalities review contained a strong message for policy makers about improving data to support equality monitoring. In response, the Office for National Statistics conducted a cross-government review of equalities data, published last year. Also, high level working groups at both the Department of Health and ONS are taking steps to improve both the quality and quantity of data.

Plans for the future

More significant developments will also support this and there are positive signs for the future. Understanding health needs will be strengthened by the new joint strategic needs assessment, under which NHS commissioners will work in partnership with local authority organisations and make better use of local sources of data.

The government is already committed to reducing inequalities in GP services. Better access and experience of those services by ethnic minority patients in particular was the focus of a review published in May by Royal College of GPs chair Mayur Lakhani.

The experience of practices in Liverpool, Tower Hamlets and Lambeth primary care trusts, among others, has shown that the collection of ethnicity and language data at practice level is feasible and sustainable.

GPs are encouraged to collect ethnicity data for new patients in the quality and outcomes framework incentive scheme. Last year, half of practices (54 per cent) qualified for the single point, which required the recording of ethnicity for 100 per cent of new patients. Overall, ethnicity was recorded for 84 per cent of newly registered patients.

In secondary care, developments in the pipeline include mandatory recording of ethnicity for people attending outpatient and accident and emergency departments and central collation of the data, as with hospital episode statistics. Provided there is access to the data through the national IT programme once it starts to flow, commissioners will be able to understand whether there are any inequalities in referrals or treatment, and whether poor access to primary care leads to higher use of A&E.

There is also a new determination to improve inequalities data in specific service areas. For example, the government's cancer reform strategy, released last December, broke new ground in placing inequalities centre stage.

It called for the NHS to work harder to ensure screening for everyone who is eligible, those with suspected cancer are referred promptly, patients get information in the appropriate language, and they experience satisfactory quality of care, from diagnosis through to palliative care. The strategy promises better data to underpin these ambitions.

Ongoing struggle

Even if collecting information about ethnicity becomes compulsory in these new areas, it will take time to reach usable levels of coverage and quality. And data collection does not guarantee commissioners will use it. Many organisations are not using available data to full effect.

Ethnicity recording for inpatients and day cases in the hospital episode statistics was made mandatory in 1995. Coding has increased steadily and is now about 85 per cent complete. Hospital episode statistics can be used to examine admission rates by diagnosis and procedure for subgroups of patients, including by age, gender and ethnicity.

There is a powerful case for making more examples of research and practical applications of the data available to the NHS. Much now hinges on the dissemination of such work to persuade clinicians and commissioners that its collection is both necessary and useful in the planning and delivery of services locally.