The ultimate opt-out

Multi-disciplined healthcare is standard practice today. Yet an important legal precedent to do with information sharing shows how important it is that practitioners do not presuppose how patients weigh health outcomes relative to privacy. As debate continues over opt-in and opt-out models for Patient Controlled Electronic Health Records, the lessons of this case should be re-visited, because it was sympathetic to a patient’s right to withhold certain information from their carers for privacy reasons.

In 2004, an oncology patient KJ was being treated at a hospital west of Sydney by a multi-disciplined care team. At one point she consulted with a psychiatrist. Sometime later, notes of her psychiatric sessions were shared with others in the oncology team. KJ objected and complained to the NSW Administrative Decisions Tribunal that her privacy had been violated. Hospital management defended the sharing on the basis that it was normal in modern multi-disciplined healthcare and that it therefore represented reasonable Use of personal information under privacy legislation. However, the tribunal agreed with KJ that she should have been informed in advance that her psychiatric file would be shared with others. That is, the tribunal found that sharing patient information even with other professionals in the same facility constituted Disclosure of Personal Information and not just Use.

In broad terms, under Australian privacy laws, the Disclosure of Sensitive Personal Information generally requires the consent of the individual concerned, whereas Use does not, because it is related to the primary purpose for collection and would be regarded as reasonable by the individual concerned.

There is no argument that the exchange of health information with colleagues caring for the same patient is inherent to most good medical practice. Sharing information would probably be universally regarded by healthcare providers, in the context of privacy legislation, as a reasonable use, closely related to the primary purpose of collecting that information. And yet KJ v Wentworth Area Health Service recognises that the attitudes of patients as to what is reasonable may differ from those of doctors. If there is a significant risk that a given patient would not think it reasonable for information to be shared, then privacy legislation in Australia (as typified by NSW law) requires that their express consent is sought beforehand.

Many healthcare facilities in NSW responded to this case by improving their Privacy Notices. At the time of admission (and hopefully also at other times during their treatment journey) patients should be informed that their Personal Information may be disclosed to other healthcare professionals in the facility. This gives the patient the opportunity to withhold details they do not want disclosed more widely.

The tribunal noted in KJ v Wentworth Area Health Service that “while generally speaking the expression ‘disclosure’ refers to making personal information available to people outside an agency, in the case of large public sector agencies consisting of specialised units, the exchange of personal information between units may constitute disclosure“.

In other words, lay people may perceive there to be greater “distance” between different units in the health system, even within the one hospital, than do healthcare professionals. Legally, it appears that the understandable interests of healthcare professionals to work closely together do not trump a patient’s wishes to sometimes keep their Personal Information compartmentalised.

This precedent is important to the design of EHR systems, for it reminds us that the entirety of the record should not be automatically accessible by all providers. But more subtley, it also re-balances the argument often advanced by doctors that opt-in may be injurious because patients might not make the best decisions if they pick-and-choose what parts of their story to include in the EHR. Even if that clinical risk is real, the ruling in KJ vs Wentworth Area Health Service would appear to empower patients to do just that.

In my view, the resolution of this tension lies in better communication, and good faith. What matters above all in electronic health is trust and participation. We know that patients who fear for their privacy will actually decline treatment if they do not trust that their Personal Information will be safe. Whether an EHR is technically opt-in or opt-out doesn’t matter in the long run if patients exercise their ultimate right to just stay away. Privacy anxieties may be especially acute around mental health, sexual assault, drug and alcohol abuse and so on. It is imperative for the public health benefits expected from e-health that patients with these sorts of conditions have faith in EHRs and do not simply drop out.

Reference: Case Note: KJ v Wentworth Area Health Service, NSWADT 84, Privacy NSW; Date of Decision: 3 May 2004