Surveying anonymity and the public good
Our survey shows researchers and the public disagree
Comment Members of the public are wary of having their data used – even anonymously – for research purposes, whilst researchers are altogether more laid back about the proposition.
That is one key conclusion of a Department of Health consultation on Additional Uses of Patient Data (pdf), published on 1 December, which found that "about half of the general public (53%) and patients (46%) thought that identifiable data should never be used without consent while only about one in ten researchers (11%) thought this".
It further reported: "More than half of the researchers (54%) thought that patient identifiable data should sometimes be used without patient consent as long as there was review by a group such as PIAG. Lower proportions of patients (30%) and the general public (30%) agreed".
This difference may reflect little more than a long-running debate between researchers and researched. However, it may also illustrate a number of issues that are likely to figure in debate around public policy and data over the next twelve months, including the over-enthusiasm of the well-intentioned, and a growing rift between Labour and Tories on how central government should use data.
Over the last few months, we have investigated instances where individual data has been collected for research purposes without clear explanation of the purposes to which it would be put, or even any positive effort to obtain permission from the data subjects. This happened in Lincolnshire, when the Local Community Health Services (LCHS) requested intimate details of children’s behaviour and wellbeing from parents.
Public outcry followed: but when last we spoke with LCHS, little had changed. They justified the survey as it supported programmes designed to do good: they showed little empathy for individuals who might just not wish to have their data collected.
They also run a relatively intimate "Lifestyle Behaviour Review" (pdf) of year 8 pupils. Whilst the LCHS claim this is "anonymous", they have dragged their heels in response to a question about whether their survey is genuinely "anonymous" in terms of the Data Protection Act. As Data Controllers are aware, the scope of the DPA is in practice synonymous with "identifiable" data: if data items can be combined in such a way that a specific individual is identifiable, there is no need for name or address to be present for the law to apply.
The Office of National Statistics are acutely aware of this issue, when publishing small area statistics. To prevent this, they use "record swapping", where "a small sample of records are swapped with a similar record in another geographical area". They also require that "the average cell size must be greater than or equal to one" and adjust small counts appearing in any table cell.
So is the Lifestyle Review – a document that quizzes young people about their drink, drugs and sex habits – genuinely unidentifiable? Given that it carries postcode and must identify age to within a year or so, it is hard to share the LCHS conclusion that it is.