Privacy and the Public Good? Health information in the digital age Katrine Evans

1. Privacy and the Public Good? Health information in the digital age Katrine Evans Assistant Privacy Commissioner 6 November 2009

2. Privacy is dead – get over it?

3. Some issues for discussion • Sharing information within the health service – and outside? • Storing information securely – can you use the cloud? • Scientific advances • Shifts in patient expectations • Ministerial Review Group Report

4. Shared electronic health records

5. Features of electronic health records (EHR) • Information is more fluid – can be harder to know all the ways in which it will be used once in the system • Organised by NHI – protect integrity of the number – also makes merging of datasets much easier (not necessarily a good thing…) • Every interaction with system creates new data • Wider range of people using data who are divorced from the consumer • Pressure on first-contact clinician to explain all the uses of information etc • Strong temptation to hold, store and use expanding range of information to monitor/improve services • Devastating loss of trust if anything goes wrong.

6. Maintaining patient control – benefits of EHR • Increased accuracy (though still need to be wary of the GIGO principle…) • Increased ability to audit – unauthorised access is trackable • Increased transparency for user eg through patient-level web portal • A major non-privacy but public good benefit • Cost efficiency – more money for treating longer-lived population with increasingly expensive services.

7. Maintaining patient control – risks from EHR (manageable) • Security – ensuring that only authorised people can see but ensuring system can work in practice • The larger the database, the more valuable it is to target. Also risks of accidental loss eg portable media • Easier to silently collect information. Patient should still know what is going on – plus what are his or her rights to opt-out? (or, even better, to opt in). • Interface with other systems eg insurers • Ability of patient to access – but in some cases may be able to withhold certain information from them • Forcing health providers to use the system? Strong requirements of trust, communication, practitioner-level input

8. Wider security challenges – moving into the cloud?

9. Who’s got what… • Offshore storage eg with cloud provider … • who has it? • what can they do with it? • whom do they share it with? • what are their security controls and who is responsible if something goes wrong? (what country’s law applies?)

10. Scientific advances – the move from this …

11. … to this

12. The “purpose” check • Be clear about why you need information. • Only get what you need. • Be careful of expanding purposes beyond the original – stop, think, consult. • Beware of vague claims of collecting more and more information for “the public good”. Make sure you take account of privacy and trust-based care – these are public goods too. Balance everything. • Create good system of checks and reporting on what’s happening - enhance trust and participation.

13. Patient expectations are changing too …

14. Patients know they have rights • (though they sometimes get their rights wrong…) • you do have to have a good system for allowing patient access to health information • a good, workable system of dealing with representatives • the confidence to buy yourself time to think (and get advice, if necessary) – rather than just fulfilling demands for instant gratification • Patients’ belief that they can veto information use/sharing is not always correct.

15. The Ministerial Review Group Report – generally positive, some need for care

16. The “Horn” Report • Greater involvement of clinicians is widely supported. • Centralised EHR database discarded in favour of an “interoperable and connected distributed approach” – also popular (systems talking to other systems rather than building a single Fort Knox…). • However, proposals to centralise DHB information in national agencies create need for very strong protection against security breaches (harm much higher if they occur). • Unclear what will happen to national collections of health info – mustn’t lose sight of them. Need for proper governance – avoid risk that they’ll just be used as administrative resources.

17. Privacy is a major public good • There are other public goods too, but balance required. • Ensure it is factored in from the start of decision-making – privacy by design (you can’t afford to retro-fit it at a later stage).

18. Contact details www.privacy.org.nz enquiries@privacy.org.nz Katrine Evans +64 4 494 7081 Katrine.Evans@privacy.org.nz