Support for changes to the Health Information Privacy code

NZORD’s submission to the Privacy Commissioner – April 2012

The Privacy Commissioner has proposed a number of changes to the Health Information Privacy code, all set out in their information sheet on the proposed changes and in the detail of proposed amendment number 7 to the code. The code changes are intended to coincide with the passing of related legislation and may be subject to any changes in the final legislation. Among the issues dealt with by these proposed changes, NZORD has a particular interest in the provisions regarding disclosure regarding risk to others, and provisions in the code relating to storage and use of blood spot cards. Here is our submission made in April 2012:

In 2007 NZORD submitted on proposed changes to the code regarding “serious and imminent” as a trigger to authorise disclosure regarding risk to others. See our archived submission at this link.

That submission was focussed on genetic information. We note the current amendments are more general in respect of the sort of information that might be disclosed. We support the current proposed changes as being reasonable in their applicability to a range of different health conditions and circumstances where disclosure might be contemplated.

However we again advise that consideration is given to the complexity of genetic information and the limited expertise in the health system to analyse issues of risk, likelihood, severity and the time at which the impact might occur. Perhaps there is scope for the Privacy Code to give general commentary about these issues and set a standard where practitioners are expected to seek expert advice whenever such an issue may arise for them.

In respect of the proposed changes relating to blood spot cards, we support the changes as they seem to us to be aligned and consistent with the policy framework approved by Cabinet in relation to the newborn metabolic screening programme.

One question we have about schedule 3 which we ask you to consider in respect of derived information, is to ensure that the ability of the National Screening Unit to publish annual reports for the Ministry, District Health Boards and other relevant agencies (which it regularly does), and to publish statistical summaries and reports publicly (which it does not currently do, but intends to do, and we think it should do) for the benefit of the public record, community education, etc, should not be restricted in any way.

It may be clear that they have such an authority and the proposed changes would not restrict that in any way, but as this type of report is not specifically mentioned in the permitted primary and secondary uses, which are the phrases the proposed changes use to indicate what is permitted, we raise a concern that the proposed wording might have unintended consequences of restricting such reports. We ask that this be specifically addressed in your review to ensure appropriate internal health system reporting and external public reporting can occur, on programme activities, statistics, findings and similar matters relating to good heath system administration, public record and public interest.

Thank you for the opportunity to comment.

John Forman
Executive Director, NZORD