Rachel Stephen-Smith reveals advice is being sought on health privacy law interpretation

Rachel Stephen-Smith said the health officials had a very strict interpretation of the territory's Health Records Act but also emphasised privacy was critically important when releasing any details of an individual.

Ms Stephen-Smith made the comments in an interview with The Canberra Times after it was revealed health officials blocked the release of some COVID-19 data and misled the public over the reasons why.

Decision makers within ACT Health did not want Canberrans to see the kind of detail about vaccine status and underlying health conditions regularly provided in other states, documents released under freedom of information revealed.

They withheld information because of unspecified privacy reasons, but said publicly it was because they did not "routinely collect that data".

Ms Stephen-Smith has defended the actions of the Health Directorate, saying the ACT's Health Records Act was strict, particularly due to the small population in the territory.

The act means, for example, if there has been a car accident the ACT's Emergency Services Agency would provide information on the condition of a person when they were taken to hospital.

But when somebody is admitted in hospital, health authorities will not provide any further information. If somebody had been transported to hospital in a critical condition, further information on whether their condition improves or worsens is not given.

"We know that in some jurisdictions there will be the provision of information around whether someone is in a serious but stable condition or a critical condition in hospital and the position of our hospitals to date has been not to release that," Ms Stephen-Smith said.

"I have asked for some further advice in relation to those interpretations of the act and I think it could go either way because the ACT Health Records Act is quite strict around the privacy of individuals.

"Because the ACT is a small jurisdiction there will be people in the community who know who that person is and then the question is to what level is a stable condition personal health information in relation to that person, that could be a breach.

"Historically, our hospitals and our health services including the Chief Health Officer have taken a very strict interpretation of the Health Records Act in the ACT."

Ms Stephen-Smith said legislative change could be considered if needed but reaffirmed that health privacy was incredibly important. She said while information around a person's age or health condition was not identifying information to the broader community it could reveal that person's identity to those who know the person.

In some instances this could cause harm for the individual and she pointed to the first identified COVID case in the ACT August last year, which triggered a lockdown.

"An example where information was released that had to be released that wasn't personal health information that caused harm to a person was the first case of COVID-19 in the Delta wave," Ms Stephen-Smith said.

"The age and sex of the person who had contracted COVID was released along with a list of exposure sites because that had to be released for the public health response to be effective.

"Someone in the community was able to put together the age and gender and those exposure sites and identify that individual and then put information out in the public domain that named that individual."

The man was abused on social media after his identity was outed. He later spoke publicly about the ordeal.

ACT health authorities came under fire as scant information on COVID cases in the territory was provided. Only basic details such as case numbers, hospitalisation numbers and the vaccination rate was released.

This came to a flashpoint last month when freedom of information documents showed officials wanted to keep information private, such as the fact only one person died with a booster in the month of January due to patient privacy.

The revelations were in internal emails sent as officials worked on a response to a request from The Canberra Times for information on underlying health conditions and the vaccine status of people who were hospitalised and died with COVID-19 in the ACT in January.

ACT Health has sought to provide more information to the public in recent weeks. A weekly epidemiological surveillance report has been drastically expanded to include information on the vaccination status of hospitalised cases, deaths and an age-group breakdown of new cases.

The freedom of information documents also showed that advisers from Ms Stephen-Smith's office had asked for information to be provided around the fact that a number of patients had been in palliative care but this requested was rejected as they only had anecdotal data.

Ms Stephen-Smith has rejected suggestions that the directorate has kept data from her. She has said there have been "robust discussions" around what data should and should not be released.

She also said datasets around vaccination status of hospitalised patients, underlying health conditions and deaths in Canberra did not drive the territory's health response as the numbers were small.

Officials tended to look at national statistics or data in larger jurisdictions.

"When we talk about what kind of data we're able to release... it's not necessarily about a particular point in time information or data but actually how we present information to the public and when it's appropriate to do so," Ms Stephen-Smith said.

"It's about the information and it's also about the data and there are those considerations around what to privacy rules mean... what does that really mean in the environment that we're and at different times through the pandemic.

"There are times when it is actually valuable for the public to know what the impact of vaccination is and what data we're seeing around that.

"At the moment we're in a situation where COVID is everywhere. Everybody knows that the evidence around the world is demonstrating vaccination helps to prevent severe illness we don't actually need to release individual information to drive home that message to people, everybody already knows that."

Ms Stephen-Smith said the information had been provided to cabinet on a regular basis. She said the government did not realise there was such a strong public appetite to see the information.

"I don't think it's ever been a reluctance to do it, it's been a very busy time... this just wasn't at the top of their priority list to try to get all of this work done, in part because it actually wasn't useful in guiding the public health response," she said.

"[It became clear] the public wants to see more of that, the media is calling for it, we'll make sure that we can get that out in a responsive way."

No information has been released on patient comorbidity data in the ACT. Ms Stephen-Smith indicated it was unlikely this would be routinely reported to the public.

She said the definition of an underlying health condition was too board and it did not provide any useful information about whether COVID contributed to or was the primary cause of death.

She also said releasing the data could be insensitive.

"I'm really conscious in this conversation about the feedback we've had from people with disability and people with chronic illness, about the way some of this comorbidity information has been presented ... I don't think anyone who talks about comorbidity and other jurisdictions means it this way but it is interpreted by people with disability and people with chronic illness as excusing those poor outcomes from COVID," Ms Stephen-Smith said.

"It also has the potential to stigmatise a community or make a community feel like they're being stigmatised and so on balance, it's not actually particularly helpful information to be providing, in addition to the privacy considerations, when you're talking about one individual who has passed away."