Being part of the conversation: privacy and disability Katrine Evans 6 December 2010

Privacy supports partnerships Partnerships between: providers and clients clients and whanau/caregivers providers and whanau/caregivers.

“Health information” Not just health information as such – also information about disabilities and disability services And a “health agency” includes an agency providing disability services Health Information Privacy Code, clause 4.

Privacy is an important right in your toolbox But what does “privacy” mean? Focus of HIPC – protection of information about people (Code of Consumer Rights - physical privacy)

Managing information well = partnership. Purpose Explanation Trust “PET” also = “Privacy Enhancing Technology” …

Purpose is often not a problem But worth checking Health Information Privacy Code, rule 1.

Explanation and involvement is more usually the missing factor Case study: What do fire wardens need to know? council flats; information released to fire wardens about residents’ disabilities fire wardens were just residents

Transparency leads to trust. notification when collecting – what is being collected and why, and where’s it going giving access to personal information formally noting views if there is a difference in opinion

Some other points to watch. storage and security accuracy

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