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Privacy, Quality and Electronic Health Information. Privacy, Quality and Electronic Health Information. Royal New Zealand College of GPs Quality Forum 14 February 2009. Sebastian Morgan-Lynch sml@privacy.org.nz Policy Adviser (Health) Office of the Privacy Commissioner.
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Privacy, Quality and Electronic Health Information Privacy, Quality and Electronic Health Information Royal New Zealand College of GPs Quality Forum 14 February 2009 Sebastian Morgan-Lynch sml@privacy.org.nz Policy Adviser (Health) Office of the Privacy Commissioner
Health Information Privacy Code 1994: Summary • Only collect the information you need • Get it from the person concerned • Tell them what you're doing • Be nice when you're doing it • Take care of the information once you've got it • They can see it if they want to • They can correct it if it's wrong • Make sure it's accurate before you use it • Get rid of it when you're done with it • Only use it for the purpose you got it for • Only disclose it if that's why you got it • Be careful with unique identifiers
Health Information Privacy Code 1994:Summary of the Summary • Purpose • Openness
Paper Records • Traditional, convenient and familiar • Vulnerable to fire, water, theft • Likely to be limited number of copies • No way to tell if someone has looked at (or copied) a record • Physically bulky
Electronic Records • A lot of information can be stored in a small (=>tiny=>miniscule) unit • A lot of information can be lost very quickly • Complex range of potential access – anonymised, pseudonymised etc • Much easier to collate and analyse data, once collected • Much, much more accessible over distance • People don't necessarily understand them • Easy to track access, if system set up with appropriate safeguards
The Situation • Most GPs with computerised practices • Public awareness of electronic health information low • Increasing awareness of deaths due to medical error - DHB serious and sentinel events reports, ~100,000 per year in US • Multiple regional and national projects to develop EHRs or electronic health systems • Growing concern in sector over risks arising from expansion of electronic health records • No compulsory data breach disclosure • Potential for huge data breach – sweeping change in public perception – baby/bathwater
Privacy Protections for Electronic Health Records • No legal distinction between privacy of health information stored on paper and electronically • Practical issues around purpose and openness with electronic information – “gatekeepers” • How many people know how their information is actually going to be used? • Whose job is it to tell them?
Rule 3 Paraphrase • As the ‘front line’, GPs need to make sure their patients know why their information is being collected and who is going to see it • Therefore, GPs need to know where the information they collect is going to go, and why • Currently this is not always the case
Testsafe • Testsafe created as regional results repository in Auckland region (CMDHB, WDHB, ADHB) • Privacy framework, opt off, ability for patients to ‘blank’ date ranges • Harbour Health unhappy with various aspects of programme, particularly privacy, recommended its GPs not participate • Meeting end 2008, agreed that Testsafe needed to help ensure patients and GPs knew how, where and why the results were being stored
Benefits, Risks, Opportunities • Benefits • National access to health information – servicing increasingly transient population • Potentially more efficient use of resources • Lessen medical errors from transmission, transcription, lost referrals, incorrect medication etc • Risks • More potential for large scale data breaches • Loss of consumer trust if improperly managed • Large collections of identified clinical data very tempting for secondary uses – commercial, clinical, employment • Opportunities • Ensuring good information management practices generally good clinical sense • GPs in position to play key role as advocates for their patients’ interests
Contact Telephone: Wellington (04) 474 7590 Auckland (09) 302 8680 Enquiries hotline: 0800 803 909 Email: sml@privacy.org.nz Internet address: http://www.privacy.org.nz