Electronic Records: Privacy, Digital Rights and the Database State Phil Booth, National Coordinator, NO2ID and co-founder www.TheBigOptOut.org

Some definitions The database state: “ the tendency to try to control society by watching people’s data…”

The database state:

“ the tendency to try to

control society by watching people’s data…”

Some definitions Information security is not Data Protection is not Privacy

Information security

is not

Data Protection

is not

Privacy

Some history… 1910 – struggle over who owns medical records leads to Lloyd George envelope 1992 – Information management and technology (IM&T) strategy “a single electronic health record available to all throughout the NHS” BMA objects; in 1996 John Major sets up the Caldicott Committee which finds 60+ unlawful data flows Blair: Care Standards Act 2000 allows SoS to legalize them 2002 – decision to set up ‘National Programme for IT’, the ‘NHS database’ (actually several) 2005 – project showing classic symptoms of a big software project failure

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

1992 – Information management and technology (IM&T) strategy “a single electronic health record available to all throughout the NHS”

BMA objects; in 1996 John Major sets up the Caldicott Committee which finds 60+ unlawful data flows

Blair: Care Standards Act 2000 allows SoS to legalize them

2002 – decision to set up ‘National Programme for IT’, the ‘NHS database’ (actually several)

2005 – project showing classic symptoms of a big software project failure

Helen Wilkinson’s case Helen had been a health service manager for 20 years She was wrongly listed as a patient of an alcohol treatment centre She demanded the data be corrected or removed – officials wouldn’t or couldn’t When her MP called an adjournment debate, Caroline Flint told Parliament it had been done – it hadn’t And it took several months after that… Helen and her NHS volunteers run TheBigOptOut.org’s advice line as if it were GP surgery – patient confidentiality is paramount

Helen had been a health service manager for 20 years

She was wrongly listed as a patient of an alcohol treatment centre

She demanded the data be corrected or removed – officials wouldn’t or couldn’t

When her MP called an adjournment debate, Caroline Flint told Parliament it had been done – it hadn’t

And it took several months after that…

Helen and her NHS volunteers run TheBigOptOut.org’s advice line as if it were GP surgery – patient confidentiality is paramount

TBOO Phase I

The Joseph Rowntree Poll In an ICM poll of 2,231 adults between 21-30th Oct 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% Don’t know 6% Net opposition 53%

In an ICM poll of 2,231 adults between 21-30th Oct 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%

Don’t know 6%

Net opposition 53%

Risks, developments and Phase II

Privacy doesn’t scale Main privacy threat is usually ‘insiders’ 1 PCT, 1 month − 70,000 cases of “inappropriate access” via password sharing Traditional GP: 12 staff have access to 10,000 records. Maybe 1 issue per 30 years What happens if we let 100,000+ staff (500k already issued smartcards) see 50,000,000 records?

Main privacy threat is usually ‘insiders’

1 PCT, 1 month − 70,000 cases of “inappropriate access” via password sharing

Traditional GP: 12 staff have access to 10,000 records. Maybe 1 issue per 30 years

What happens if we let 100,000+ staff (500k already issued smartcards) see 50,000,000 records?

Opting out of uploading The government still plans to hoover up all medical records ‘ Consent to view’ is a figleaf, little better than ‘presumed consent’ Under the CfH ‘opt out’ everyone but clinicians will still be able to view records Ministers say your wishes will be respected if you tell your GP, but that’s just the Summary Care Record…

The government still plans to hoover up all medical records

‘ Consent to view’ is a figleaf, little better than ‘presumed consent’

Under the CfH ‘opt out’ everyone but clinicians will still be able to view records

Ministers say your wishes will be respected if you tell your GP, but that’s just the Summary Care Record…

Opting out of uploading There are at least two other central NHS systems from which you can opt out: Population Demographics Service (PDS) – the NHS master phone book. Get stop-noted if you really want to be ex-directory Secondary Uses Services (SUS) , collects hospital data. You can invoke your rights under ECHR, or Section 10 of the Data Protection Act Of course, NO2ID does not oppose all aspects of NHS IT, just those corrosive of medical confidentiality

There are at least two other central NHS systems from which you can opt out:

Population Demographics Service (PDS) – the NHS master phone book. Get stop-noted if you really want to be ex-directory

Secondary Uses Services (SUS) , collects hospital data. You can invoke your rights under ECHR, or Section 10 of the Data Protection Act

Of course, NO2ID does not oppose all aspects of NHS IT, just those corrosive of medical confidentiality

In summary Medical confidentiality (trust!) is essential to the public health ‘ Consent to view’ gives the game away Don’t allow your profession to be undermined by wider political / administrative agendas Please act on patient requests Public opposition to centralised data-sharing is higher than ever – Sunday Times/YouGov poll in Jan 09 shows 3 to 1 against (65%:19%)

Medical confidentiality (trust!) is essential to the public health

‘ Consent to view’ gives the game away

Don’t allow your profession to be undermined by wider political / administrative agendas

Please act on patient requests

Public opposition to centralised data-sharing is higher than ever – Sunday Times/YouGov poll in Jan 09 shows 3 to 1 against (65%:19%)

www.TheBigOptOut.org www.no2id.net [email_address]