National children's database gets go-ahead

Tags: AIM child consent Database Government GP information sharing Social care

13 Dec 2005

The government has given the go-ahead for the creation of an electronic information sharing index containing information on all children aged 0 to 18 in England.

The IS (information sharing) Index was launched by Beverley Hughes, children’s minister, who said that the aim was for the database to be rolled out by the end of 2008.

The index will contain basic information on each child, including their name, address, gender, date of birth and a unique identifying number based on the existing child reference number/National Insurance number.

It will also contain basic identifying information about the child’s parent or carer and contact details for services involved with the child which as a minimum will be school and GP practice, but also other services where appropriate.

The aim of the index is to allow practitioners working with children to identify and contact one another easily and quickly to enable better sharing of information. Those expected to use the index include GPs, health visitors, school nurses and accident and emergency staff as well as social services teams.

The index will also include a facility to allow practitioners to indicate to others that they have information to share, are taking action, or have undertaken an assessment, in relation to a child.

However the government has emphasised that the index will not provide an integrated case management system, or replace case record systems already under development in health (NHS Care Records) or social care (Integrated Children’s System), and it will not record statements of a child’s needs, academic performance, attendance or clinical observations about a child.

Hughes said the creation of the index followed Lord Laming’s inquiry into the death of Victoria Climbie. Lord Laming found that information about Victoria had not been properly recorded and communication between professionals from different agencies had been poor. He recommended that government explore the benefits of developing a national database containing basic information in respect of all children and young people.

Hughes said: “These proposals balance the need to do everything we can to improve children's life chances whilst ensuring strong safeguards to make sure information stored is minimal, secure and used appropriately. Parents and young people will be able to ask to see their data and make amendments. They will retain full rights under the Data Protection Act.”

Access to the index will be according to the role of the practitioners, all of whom will need to have undergone relevant training and checks. The government’s policy statement says children and young people, and where appropriate their parents, will have the right to ask to see their information and challenge it if it is wrong.

The policy statement says consent would not be required to record contact details for the majority of services but will be required to record contact details for targeted or specialist health services, where there is a strong public expectation and practitioner culture that information will only be shared where informed, explicit consent has been secured.

The index will not replace the Child Protection Register, nor will there be a flag on the index that the child is on the Register, since this is sensitive case information.

The Care Record Development Board (CRDB) said last month that it has resisted requests for agencies concerned with child protection to draw information directly from the NHS Care Records Service and for every attendance by children at accident and emergency departments to be logged on the index.

The government has opted for a central index, as favoured by most local authorities, with the data partitioned into 150 parts, one for every local authority in the country. The perceived benefits of a central index are that it will ensure that the system works for children who move areas or who access services from more than one area. Partitioning the data will enable local authorities to take the lead in maintaining the accuracy of the data for children living in their area. Technical access to the index will be via a web link.

The government has tested to the proposals for an information sharing index at 41 trailblazer sites across England and says it will invest £243 million in the creation of the index plus a further £41 million a year to maintain it. The government estimates the index could save £88 million a year in time spent by practitioners trying to identify and contact each other.

The initial set-up costs will include the cost of ensuring the original data supplied to the index is accurate, that there are robust systems in place to ensure security, and that staff are trained to use the index properly. Operating costs will pay for the staff needed to ensure the ongoing security, accuracy and auditing of the index.

Links

Announcement from the Department for Education and Skills

Policy statement on the information sharing index

Requests for direct access to NCRS resisted

Baby steps

Reader's Comments

This worries me

jlgh_consult@dsl.pipex.com

13 Dec 05 12:12

This for me is the most sensitive information in the world. With so many millions of potential users how can such a database realisitically be protected against the odd one with paedophile tendencies? Such people slip through the net already, but at least the damage that they do is localised.

IS - Identity theft Support database?

14 Dec 05 07:12

This worries me also - not least because it provides a potential means for hackers to link NI number (for minors over 16) to date of birth, name and address. Additionally, I wonder about the impact on practitioners (e.g. GPs) faced with an expanding list of centralised databases holding personal data. Isn't there a danger of "data source overload" here? And will they be culpable if they fail to consults a particular source and there are resulting adverse consequences?

aka the NIR by the back door

15 Dec 05 10:12

I share the worries expressed in the above two comments. The miserable standard of security in government databases is being exposed almost weekly in the press. Further, I believe this to be a way of getting the government's much derided ID card and National Identity Register in by the back door. Register kids at birth, and they'll be far less likely to complain when they are compelled to "upgrade" to the adult card.

What a waste...

15 Dec 05 13:12

of a quarter of a billion pounds. This would appear to be the most appalling case of duplicated effort. All of the information items mentioned in the article will be included in the NHS care record - which GPs, health visitors, accident and emergency staff etc will have access to anyway. Having gone to enormous expense (six billion quid?) to set this up (and create elaborate mechanisms to ensure data protection) why re-create it? Is this just because social sevices and the NHS can't be bothered to work together? Or is this an admission that the NHS electronic care record is still a million miles away?

Either way it doesn't smell of "joined up government" - or effective use of IT.

What a waste

15 Dec 05 16:12

Well let's assume for this illustration that PDS won't be up to this task for a couple of years. Let us also assume that this project will come in on time and on budget of £448m over five years. Then at £88m per year savings thats £440m saved over 5 years. What an incredibly sound business case!

Sound business case

15 Dec 05 17:12

Except this won't be rolled out until at least 2008, by which time even NPfIT should have got the spine up and running.

Does the minister for Children ever bump into the minister for health and chat? This sounds like a much-belated response to the Climbie report. It's taken the government so long to come up with anything that it has been overtaken by events.

Whose fault if any ?

17 Dec 05 00:12

Good comments all round here..... The way i see this is as follows:

SOMEONE MUST have voted in Labour in the last election. Now WHO the hell did this ?..... Surely.... its time to oust the government and VOTE IN ministers that UNDERSTAND IT and its technology..... this way, business cant pull the wool over the eyes of MP's..... or should that be the other way round ??!!!

Short Software / System Life Span?

amorrell@tsprojects.co.uk

18 Dec 05 10:12

It would be interesting to see how the savings of £88 million have been calculated. Looks like this number is being used to justify the cost of £243 million to develop a system and £41 million per year to operate it. The 'proper solution' would be to develop something which is both scalable and secure to protect all members of the public and not to target just children. The system outlined here is truly simple in design as it excludes clinical data which should be included but with patient anonymity. Such a system could be developed and hould be a building block for the future and not another knee jerk reaction which will be superceded in a few years time.

An interesting contradiction

19 Dec 05 14:12

I truly believe we are in the midst of quite a fervent debate on privacy and government. If you check out eHealthInsider Primary Care you will see various people complaining about a single national database just for health but here people are calling for a single database for multiple government departments.

Given that there is a debate, I think we have to err on the side of caution. The point is well made that by accepting the need for privacy we undo the opportunities for joined up government.

Re An interesting contradiction

jlgh_consult@dsl.pipex.com

19 Dec 05 17:12

Yes well put.

I have commented on the debate mentioned. It is a matter of balance. An NCRS accessible to few tens of thousands of medical staff, protected by Caldicott, a confidentiality culture and smart cards; and with the potential to save hundreds or thousands of lives a year is one thing.

A childrens' database of the kind described here accessible to an ill-defined and vastly wider group is quite another. Especially if there is no opt-out clause as NCRS has.