The Children’s The Children’s DatabasesDatabases

Ross AndersonRoss Anderson

Cambridge University and Cambridge University and Foundation for Information Policy Foundation for Information Policy

ResearchResearch

The Story so Far …The Story so Far …

1910 – struggle over who owns medical records 1910 – struggle over who owns medical records led to Lloyd George envelopeled to Lloyd George envelope

1992 – IM&T strategy ‘a single electronic health 1992 – IM&T strategy ‘a single electronic health record available to all throughout the NHS’record available to all throughout the NHS’

BMA resistance 95–6 once we realised what this BMA resistance 95–6 once we realised what this meant; ‘Security in Clinical Information Systems’meant; ‘Security in Clinical Information Systems’

Calman sets up the Caldicott Committee to Calman sets up the Caldicott Committee to postpone the issue past the 1997 electionpostpone the issue past the 1997 election

Caldicott documents many illegal information Caldicott documents many illegal information flows; HSCA s60 allows SS to legalise themflows; HSCA s60 allows SS to legalise them

The Story so Far (2)The Story so Far (2)

‘‘Blair moment’ in 2002 – ‘Tony wants’Blair moment’ in 2002 – ‘Tony wants’ Ray Rogers vision of the big central Ray Rogers vision of the big central

database is dusted off – NPfIT, CfH,…database is dusted off – NPfIT, CfH,… Collision with reality has diluted this to a Collision with reality has diluted this to a

centrally-held SCR (for now)centrally-held SCR (for now) Government really believes this is working Government really believes this is working

and they now plan to roll out the same and they now plan to roll out the same architecture to childcare, elder care, …architecture to childcare, elder care, …

Helen Wilkinson’s caseHelen Wilkinson’s case

Helen is a practice manager in High Helen is a practice manager in High WycombeWycombe

Wrongly listed as a patient of an alcohol Wrongly listed as a patient of an alcohol treatment centretreatment centre

She demanded the data be corrected or She demanded the data be corrected or removed - officials wouldn’t / couldn’tremoved - officials wouldn’t / couldn’t

Caroline Flint promised Parliament it had Caroline Flint promised Parliament it had been donebeen done

It hasn’t – and the story continues…It hasn’t – and the story continues…

Extending NPfIT to KidsExtending NPfIT to Kids

‘‘Every Child Matters’ white paper (2003)Every Child Matters’ white paper (2003) Children Act 2004 provided powersChildren Act 2004 provided powers Information to be shared between schools, Information to be shared between schools,

police, social workers, probation, doctors…police, social workers, probation, doctors… The ‘SCR’ is ISA – the Information Sharing and The ‘SCR’ is ISA – the Information Sharing and

Assessment system – which points to all Assessment system – which points to all services interested in your childservices interested in your child

So schoolteachers will know if a child is known So schoolteachers will know if a child is known to social workers / policeto social workers / police

IC study by FIPR (due for release real soon …)IC study by FIPR (due for release real soon …)

Systems (1) – ConnexionsSystems (1) – Connexions

A pilot scheme for 13-19s with ‘personal A pilot scheme for 13-19s with ‘personal advisers’ and a card also giving discounts advisers’ and a card also giving discounts at HMV (better not buy Black Sabbath :-)at HMV (better not buy Black Sabbath :-)

Pilot areas each have databases of Pilot areas each have databases of children with health status, special children with health status, special educational needs, phone number etceducational needs, phone number etc

Contains sensitive data such as substance Contains sensitive data such as substance abuse, opinions such as risk of offendingabuse, opinions such as risk of offending

Consent from parents not sought (‘Gillick’)Consent from parents not sought (‘Gillick’)

Systems (2) – ISASystems (2) – ISA

Information Sharing and Assessment Information Sharing and Assessment Index – like the summary care recordIndex – like the summary care record

Contact details – school, GP, and any Contact details – school, GP, and any interaction with police, social work, interaction with police, social work, probation, specialist serviceprobation, specialist service

Services can mark a ‘flag of concern’Services can mark a ‘flag of concern’ Stigmatization issues (especially contact Stigmatization issues (especially contact

with some specialist services)with some specialist services) Blair view: ‘might have saved Climbié’Blair view: ‘might have saved Climbié’

Systems (3) – ICSSystems (3) – ICS

Integrated Children’s System will be the Integrated Children’s System will be the detailed record for child social workdetailed record for child social work

Extends the current child protection Extends the current child protection registers from ‘child protection’ (50,000 registers from ‘child protection’ (50,000 cases in UK) to ‘child welfare’ (3-4m)cases in UK) to ‘child welfare’ (3-4m)

Very detailed information, from many Very detailed information, from many sources, including facts, opinions and sources, including facts, opinions and subjective judgmentssubjective judgments

Linked SystemsLinked Systems

Schools – National Pupil Database, OfstedSchools – National Pupil Database, Ofsted Justice – RYOGENS and other systems Justice – RYOGENS and other systems

monitor kids ‘at risk’ of offendingmonitor kids ‘at risk’ of offending Once convicted, a wide range of probation Once convicted, a wide range of probation

and other systems tell officials everything and other systems tell officials everything (or nothing? :-)(or nothing? :-)

Health – supposed to supply ‘relevant’ Health – supposed to supply ‘relevant’ diagnoses e.g. early-onset hyperactivitydiagnoses e.g. early-onset hyperactivity

Data quality issues…Data quality issues…

Social work viewpointSocial work viewpoint

It’s hard enough coping with the 50,000 kids at It’s hard enough coping with the 50,000 kids at risk of significant harmrisk of significant harm

Adding the 3–4m kids with some disadvantage will Adding the 3–4m kids with some disadvantage will paralyze the systemparalyze the system

Talking about being ‘proactive’ is easy, but what Talking about being ‘proactive’ is easy, but what does it mean on the front line?does it mean on the front line?

At present, half the kids who try to kill themselves At present, half the kids who try to kill themselves don’t get any specialist helpdon’t get any specialist help

Left (SWM) – don’t ‘collude with youth justice Left (SWM) – don’t ‘collude with youth justice policies which demonise young people’policies which demonise young people’

Right (CPS) – ‘nationalisation of childhood’Right (CPS) – ‘nationalisation of childhood’

Balance of benefit and harm?Balance of benefit and harm?

Big problem with social care is lack of Big problem with social care is lack of effective interventionseffective interventions

‘‘Sure Start’ program tried to implement Sure Start’ program tried to implement best ideas from US research – treat the best ideas from US research – treat the population, not individualspopulation, not individuals

Parenting classes, preschools, …Parenting classes, preschools, … Evaluations thoroughly disappointingEvaluations thoroughly disappointing ‘‘When all else fails, build a database’When all else fails, build a database’

Effects on medical practice?Effects on medical practice?

Every time you come across a negative Every time you come across a negative indicator, you’ll have to decide whether to fill out indicator, you’ll have to decide whether to fill out a CAF forma CAF form

At present you can do the first page and pass it At present you can do the first page and pass it to social workto social work

The online system will make you do it ‘properly’The online system will make you do it ‘properly’ What about confidentiality – especially if all What about confidentiality – especially if all

customer-facing local government staff are to customer-facing local government staff are to have access to the youth justice systems?have access to the youth justice systems?

Data Protection AspectsData Protection Aspects

You’ll have to wait for the FIPR report!You’ll have to wait for the FIPR report! This compares UK practice with European This compares UK practice with European

law and with the practice in Germany, law and with the practice in Germany, France etcFrance etc

Comment by one observer: UK practice is Comment by one observer: UK practice is on a collision course with Europeon a collision course with Europe

Eventually something will have to give. Eventually something will have to give. Will it be Britain’s membership, the Will it be Britain’s membership, the German constitution, what?German constitution, what?

ConclusionsConclusions

The approach to personal data management The approach to personal data management that mutated from the IM&T strategy into the that mutated from the IM&T strategy into the ICRS Spec into NPfIT is undergoing metastasisICRS Spec into NPfIT is undergoing metastasis

Secondaries are now growing vigorously in child Secondaries are now growing vigorously in child welfare, with more planned for elder care etcwelfare, with more planned for elder care etc

If safety and privacy problems can’t be tackled If safety and privacy problems can’t be tackled honestly in medicine, what hope have the social honestly in medicine, what hope have the social workers got?workers got?

Maybe the best hope is a European law case. Maybe the best hope is a European law case. For details, wait for the FIPR reportFor details, wait for the FIPR report