Dated 16 July 2002 and 27 August 2002
This document is at http://www.privacy.org.au/Papers/SubmnOFPC0208.html
Thank you for the opportunity to make a submission on this application.
We note that the arguments in favour of the waivers are the same as those accepted by you when making the temporary determination in December 2001.
We note that the practice of recording family history information when inteviewing patients is commonplace and widespread and agree that it would not be sensible to prevent the practice without ascertaining that third parties had consented. If consent was sought it would not only be onerous and time-consuming (and often impracticable) but often consent would not be given (or no reply received). It would clearly hinder the provision of health care if family medical history could not be requested and given at the time of consultation. A waiver from NPP 10.1 is therefore appropriate. However, it should be noted that family history is provided by the patient and is therefore only the patient's interpretation or understanding of the medical conditions of other family members. As such this information should not be considered as necessarily accurate but rather as the opinion of a third party. The determination, if granted, should emphasise this as a matter to be taken into account by health professionals when using family medical history information
We note the discussion of whether additional safeguards are necessary, such that conditions might be appropriate in the determination. Health service providers will presumably treat the family medical history in the same way as the information about the patient (within which it will normally be incorporated), but this must take into account the qualification above that its accuracy cannot be guaranteed. Records should clearly indicate the parts of the information which are `second hand' subjective opinions of the patient. When passing on information to other health professionals, the person collecting the family medical history should ensure that the recipient clearly understands the difference between factual, first hand and second hand information. The determination should make these conditions.
The determination should also perhaps point out a condition which should be self-evident - that it is not open to a health service provider to use the family medical history independently from the treatment of the patient. It would not for instance be open to the provider to seek to approach another family member with a view to a relationship (whether commercial or not), unless the approach was through the original patient. The question of whether the provider might in some circumstances be under a legal or ethical obligation to report a third party to another organisation (eg on public health, child protection or law enforcement grounds) perhaps needs canvassing in the determination
However, we do not see that a waiver from NPP1.5 is necessary. This principle only requires an organisation to take `reasonable steps' to ensure that individuals are aware of the matters listed in NPP 1.3. We think that `reasonable steps' in this case would be to ask the patient to tell the third parties at the next available opportunity (and where practicable) that they had given information about them to a health professional. Health professionals could usefully go further and give the patient a leaflet about the organisation's privacy policy to pass on to third parties or to use to brief them. Presumbably all health service providers will now be taking steps to saisfy NPP1.3 in relation to collection from the patients themselves (at least on a first consultation) and could include the matter of notice to third parties in this wider notice.
The whole point of the notice and other awareness requirements in the principles is to raise public understanding of the way in which personal information is handled, both in general (via NPP 5) and specifically in the context of particular collections (via NPP 1.3 and 1.5).
There is in our view no basis for assuming either that third parties would automatically be aware of this practice or that they would not wish to know. Even if some of them might not care, or may even be irritated by being told, these are not good reasons for not complying as far as practicable with the spirit of NPP1.5.
Further to your telephone call, I regret that there is no-one available to represent the Foundation at the conference in Canberra on Friday. We congratulate you on a concise presentation of some important issues in your paper, and look forward to seeing how they are resolved. I would however be grateful if you could take into account the following point and consider raising it for discussion.
I accept that you do not necessarily need to deal with all issues raised in the consultation at the conference, and welcome you re-assurance that the Commissioner will consider all written submissions before making his final determination. The main reason for my concern that the NPP 1.5 issue we raised has not been included in the Issues Paper is that I would have expected it to a major issue on which you would have wanted feedback from the applicant and others.
I note that while ACHA Health mention NPP 1.5 in passing in their original application, they do not appear to have dealt in detail with why giving notice would be such a major problem. Both the application and the draft determination seem to make an assumption that a waiver from 1.5 is necessary complement to a waiver from 10.1, without clearly making a case for this. A single argument is made and applied to both requirements, without in our view sufficiently differentiating and debating the balance of interests or scale of the practical compliance difficulties in relation to each requirement.
You raised today the question of the privacy of patients who may not want relatives to be aware of current treatment. This is a good point, not mentioned in any of the earlier documents, which may justify at least a partial waiver from 1.5 in some circumstances. It deserves further debate. But I doubt if it can in itself justify a complete exemption, as there will be some (many?) circumstances where the balance of privacy interests would favour notification - at least of the fact that information had been provided, if not the details. We are not suggesting an onerous and prescriptive compliance standard - merely an attempt to retain as much as possible of the broad intention of 1.5 - we suggested a general reminder to patients that they should wherever possible ensure that family members are aware that information about them has been given to the health professional.
As we argued in our original submission, one of the underlying objectives of the Act is a sea-change in the levels of transparency about personal information handling, and a corresponding reduction in the `trust us, we know best' presumption made by a lot of professions, agencies and businesses. We urge caution before the Commissioner waives the presumption of notification in such a significant area of information handling.
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