NHS Databases The Big Opt Out

1
NHS Databases The Big Opt Out

• Ross Anderson
• Cambridge University and Foundation for
  Information Policy Research

2
The Story so Far

• 1910 struggle over who owns medical records led
  to Lloyd George envelope
• 1992 IMT strategy a single electronic health
  record available to all throughout the NHS
• BMA pointed out safety, privacy problems
• John Major sets up the Caldicott Committee (to
  report back after the 1997 election)
• Caldicott documents many illegal information
  flows HSCA s60 allows SS to legalise them

3
The Story so Far (2)

• Blair moment in 2002 Tony wants
• The 1992 vision of the big central database is
  dusted off NPfIT, CfH,
• Government really believes this is working and
  they now plan to roll out the same architecture
  to childcare, elder care,
• What are the implications for clinical safety and
  confidentiality?

4
Issues of Scale

• Blair philosophy is that data will be accessible
  (MISC 31, Information Sharing Vision) but
• You can have functionality, or security, or
  scale. With good engineering you can have any
  two!
• We can live with the risks of a receptionist
  having access to the 6000 records in a practice
  but if 1,000,000 staff have access to 60,000,000
  records?
• Sealed envelopes wont work (official!)
• Secondary Uses Service will run unprotected for
  years with a hope of eventual pseudonyms

5
Data quality issues
6
Helen Wilkinsons case

• Helen is a practice manager in High Wycombe
• She was wrongly listed as a patient of an alcohol
  treatment centre
• She demanded the data be corrected or removed
  officials wouldnt / couldnt
• When her MP called an adjournment debate,
  Caroline Flint told Parliament it had been done
• But it took several months after that (and the
  story continues)

7
Extending NPfIT to Kids?

• Children Act 2004 provided powers
• Information to be shared between schools, police,
  social workers, probation, doctors
• The Childrens Index points to all services with
  data on your child
• So schoolteachers will know if a child is known
  to social workers / police
• Home Office systems will predict kids likely to
  offend
• IC study by FIPR this is unsafe and illegal

8
Opting Out

• There are at least three central NHS system
  projects from which you can opt out
• The first is the Population Demographics Service
  the NHS master phone book. Get stop-noted if
  you really want to be ex-directory
• The second is the Secondary Uses Services, which
  collects hospital data. You can tell your
  hospital you invoke your rights under Section 10
  of the Data Protection Act

9
Opting Out of Uploading

• The Government plans to hoover up all GP records
  early next year
• BMA view consent needed
• Medix poll last week 51 of GPs will refuse to
  upload data without patient consent
• Ministers are dithering!
• What do patients think?

10
The Joseph Rowntree Poll

• In an ICM poll of 2,231 adults between 21-30
  October 2006, view asked on central records
  database with no opt out
• strong support 12
• tend to support 15
• neither 14
• tend to oppose 17
• strongly oppose 36
• dont know 6
• Net opposition 53

11
Conclusions

• Its not just the ID card database the
  government is trying to centralise most data held
  on citizens by the public sector
• This is unsafe and in some cases illegal
• But we dont have to wait for a change of
  Government or a European law case!
• You can opt out of having your medical records
  uploaded with the support of many doctors
• The first step is to get the code 93C3 on your
  GP record