Original URL: http://www.theregister.co.uk/2009/11/17/childrens_data/
UK.gov hoovers up data on five-year-olds
What I did on my holidays, and all the other days
The government obsession with collecting data has now extended to five-year-olds, as local Community Health Services get ready to arm-twist parents into revealing the most intimate details of their own and their child’s personal, behavioural and eating habits.
The questionnaire – or "School Entry Wellbeing Review" – is a four-page tick-box opus, at present being piloted in Lincolnshire, requiring parents to supply over 100 different data points about their own and their offspring’s health. Previously, parents received a "Health Record" on the birth of a child, which contained around eight questions which needed to be answered when that child started school.
The Review asks parents to indicate whether their child "often lies or cheats": whether they steal or bully; and how often they eat red meat, takeaway meals or fizzy drinks.
However, the interrogation is not limited to intimate details of a child’s health. Parents responding to the survey are asked to provide details about their health and their partner’s health, whether they or their partner are in paid employment, and even to own up to whether or not their child is upset when they (the parent) returns to a room.
Completing the review is, according to a spokeswoman for Lincolnshire Community Health Services (CHS) "entirely the choice of the parent". However, the letter accompanying the review states: "Please complete the enclosed questionaire …and return it to school in the envelope provided within the next 7 days."
There is no indication on the letter of a parent’s right to opt out, and parents we have spoken with have expressed fears that failure to fill out this questionnaire might mean their child’s access to health services would be diminshed.
One went so far as to say that she found the entire exercise terrifying: given the way in which social services were nowadays so quick to intervene in children’s lives, she felt that merely objecting to this questionnaire might lead to her and her child being placed on some sort of risk register.
Ginny Blackoe, Head of Family and Healthy Lifestyle Services, confirmed that children would not be excluded from the School Nursing service on the basis of non-completion of the health needs assessment. She went on: "On reflection I agree that this should have been clearer in the letter accompanying the questionnaire and I will ensure that this is actioned by the Lead for School Nursing."
She also explained that as part of Lincolnshire’s softly-softly consensual approach to data gathering, this initial communication will be followed up with a reminder and then a third letter and a potential home visit from the School Nursing team.
El Reg put a number of specific questions both to Lincolnshire Community Health Services and to the Department of Health. We asked whether this process was lawful. We also asked whether not mentioning a parental right to opt out was a very convenient omission – and whether the process as a whole might be considered intimidatory.
Lincolnshire CHS were adamant that the process did not breach any laws on Data Protection. A spokeswoman said: "The questionnaire does not contravene the Data Protection Act." They further added that the data would only be provided in anonymised form to third parties.
However, they were not prepared to engage in discussion of how this review fitted with DPA requirements that data be "obtained fairly" and that collection be "adequate for purpose" and "not excessive". Nor have they responded on the specific issue around their right to collect data on third parties - partners of parents filling in the form.
When asked to cite specific statutory justification for collecting data in potential breach of the DPA, Ms Backoe cited Department of Health "guidance". She referred to the Children Act 2004  which she claimed "sets out standards and expectations about how services for children and young people should be developed strategically and organisationally".
Sections 12 and 29 of this Act include provisions whereby the Secretary of State may order the setting up of databases - and have already been used fairly extensively in respect of the Contactpoint project. In theory, they allow for government to demand whatever information it sees fit to demand in respect of children, and to pass it on to any third party. Nonetheless, the regulations do not appear to include any powers to demand information on parents.
She also alluded to DoH "guidance" that local areas should "aim for 100 per cent coverage of children in the locality using whatever information systems are available".
Whether the intention of this exercise was to be intimidatory or not, the net effect appears to have been just that.
The approach is not dissimilar to that already employed by the DoH in respect of patient records being uploaded to "the spine" (pdf) . To achieve 100 per cent coverage of any data source is an objective that those working in IT will know is impossible without statutory backing: but to date, the DoH have attempted to circumvent this by the simple trick of not telling patients they have a right to opt out.
Government response to concerns by the BMA and patient groups  was set out by the Chief Medical Officer , who demanded that GPs provide the names and addresses of those wishing to opt out to central government, on the grounds that their dissent was not "correct".
We also asked the DoH for comment. However, apart from an initial reaction that this project was nothing to do with them and probably belonged to the Department for Children Schools and Families (it doesn’t!), they have so far not come back to us.
If successful, this approach will be rolled out to the rest of England and Wales. ®