DoHA rejects claims patients “inveigled” into PCEHR sign-up

The Department of Health and Ageing (DoHA) has rejected claims by the Australian Privacy Foundation (APF) that patients are not giving informed consent to their information being shared on the PCEHR, and that some have been “inveigled” into signing up.

The APF recently released a statement claiming that the federal government's advertising campaign for the PCEHR was misleading and was “designed to pitch the benefits of PCEHR system registration without fully informed consent”.

It also released two public advisory statements for consumers and clinicians outlining the specific concerns the organisation has.

The chair of the health committee of the APF, health informatics professional Juanita Fernando, said the advertising campaign and the many fact sheets about the system “fail to properly inform, and hence people are being [inveigled] into consenting to participation in the scheme”.

A DoHA spokesperson rejected the claims, saying the department was “committed to consumers having the information they need to give fully informed consent prior to signing up to use” the PCEHR.

“Consumers who register for a PCEHR are provided with clear and detailed information about how their personal information will be used in the PCEHR system,” the spokesperson said.

“Essential information is provided in each registration channel and a full privacy statement is available through a number of sources including online at www.ehealth.gov.au.

“As part of an application a consumer makes a declaration that they have read the essential information. The essential information was developed in close cooperation with the Office of the Australian Information Commissioner.”

Dr Fernando said while patients give consent when they sign up, she does not believe this consent is informed.

“The issue of informed consent is pivotal to this discussion,” she said. “One cannot provide informed consent without access to pertinent information. The information published by various DOHA-linked health authorities is incomplete and very hard to read.

“Also, one can consent to register and mechanisms exist for this, what if people change their mind – where is the mechanism that allows opt out?”

Dr Fernando said she had been contacted by several people who have said they were not told about privacy considerations before signing up, but she could not reveal any details as that would necessarily involve identifying them. She said she would encourage them to contact Pulse+IT, but so far none has done so.

The APF also said that “several individuals have reported approaches targeting Centrelink clients and those in rehabilitation, the chronically ill and parents of newborns while the mother is in labour.”

“Patients in rehabilitation have reported feeling pressured by health practice staff to encourage them to join the PCEHR system with 'assisted registration'.”

Dr Fernando said she could not reveal any evidence supporting these claims “without the consent of those involved, where real or perceived, they see themselves as whistle-blowers who would be imperiled by a public ID”.

She pointed to arguments made by health informatician Terry Hannan, who has raised concerns in the past about what he believes are inappropriate approaches to patients in the hospital setting, including at Launceston General Hospital where he is a consultant physician.

Dr Hannan commented on a recent Pulse+IT article, saying he had observed the registration of a patient with five children, “during which the registrant had no idea what he was signing up for”.

“The forms were being filled by the registering staff on paper with only one adult present (the father) whose educational level required more than 'minimal guidance',” Dr Hannan wrote.

“It is obvious that these members of the community have no idea of what they are registering for and are very unlikely to have e-communications available on a daily basis.”

Dr Fernando also raised concerns about what she said was a lack of information given to consumers on who can access their records, saying the fines listed under the PCEHR Act for inappropriate or unauthorised access to the PCEHR were not adequate safeguards.

“The OAIC and System Operator can choose not to act on proven breaches,” she said. “The System Operator and their agents are exempt from litigation. The fines exclude any human factors issues and make it clear that clinicians can say "oops" and no sanction will apply.

“Or we can rely on current privacy laws, which have proven ineffective for around two decades.”

Dr Fernando also said she understood on her reading of the available documentation that all clinicians, whether they were authorised to use the PCEHR or not, had access to the PCEHRs of people who were not their patients.

“[A]ll clinicians, whether registered or not, can review the Shared Health Summary, and PCEHR registered clinicians can look at the records of people who are not their patients unless the patients specifically directs otherwise and the clinician remembers to upload information. I'd love to be wrong.”

Posted in Australian eHealth

Comments   

# PJ 2013-08-23 09:23
More information about Privacy and Access Controls needs to be circulated amongst all stakeholders linked to the PCEHR.

Time for others like Dr Fernando to start speaking out.

The PCEHR in its current format isjust like the NSA in the US, have data will mine.
# johanna 2013-08-23 22:47
I must raise my hand to confess to being one of those people expressing my concerns to Dr Juanita Fernando with regard to the underhanded recruitment of numbers to build up the e health system.

These people being targeted comprise of the lower socio economic , newly arrived refugee/immigra nt communities, found conveniently in the Department of Human Services offices. ( In my experience - the Dandenong centerlink office )

My first encounter of many months ago, was self motivated. I approached a well dressed man, standing behind a tall desk in the middle of my local centerlink office. He told me that he worked for Aspen medical and that his company had been contracted by the Federal Government, to participate in the roll out of the new e health program. He gave me a spiel similar to what one would expect from a honky shonk roadshow seller of snake oil. He even lied - he told me that one million people had signed up. ( truth 400,000 ).

A month or so ago came my second more disturbing understanding about this e health "round them up" recruitment drive. For purposes known only to the DOHA - the man behind the tall desk was gone, he had been replaced by a blonde woman of about 45ish - who had upgraded with the inviting comfort of a round table with four softly padded chairs.

The Blonde gave her full attention to a man - of obviously ethnic decent, close to the age of 50 - he sat there in that chair opposite her own, with his arms crossed over his chest.

I am not usually nosey however at this particular moment you could describe me in that way, I wanted to hear what she was telling him. I tried not to seem like a sticky beak - so I gave myself the task of looking through the pamphlets close by the round table, in any case I did not hear very much and a short while later that man stood up and left.

Now common sense should have told the Blonde to try to poach me - after all I was standing there - clearly in the "looking zone" but she didn't - She surveyed the masses of the centerlink seatwarmers and the Blonde e health hunter reached right into the furthest corner of us - right in the very back - sat a man of about 45 - 50 years old - clearly of new ethnic origins - he could not speak English at all - the Blonde was prepared - in moments she had pulled an interpreter, seemingly from out of her pocket - they lead this man to the round table and one of the first questions that they asked him was if he had children - he proudly shared with the interpreter that he had four children - the Blondes excited repetition of that fact made me feel very uncomfortable.

I cant tell you if the interpreter read out the privacy statement - I was called to my own appointment - however given that the process of enrollment began without it - I cant imagine that the enrollment process stops halfway, to read a privacy policy

It was quick, they took shameless advantage of this fellows intense gratitude to be in our country.

I told Dr Juanita Fernando about this - because while I know that this sort of thing is very wrong - I dont have the capacity to make any kind of change for that man or the ones that have been selected after him, but she does and to her credit she raised her voice in his and all of the others defense ( that means you if you are reading this, you are next )

It is rather disheartening to read the article - the DOHA taking the shoot the messenger approach, rather than to acknowledge that in its current format people are not enrolling in the e health system, simply because they are scared and the funny thing about that is that they probably dont even know about why they should be scared.

Hopefully Juanitas paper sends a clear message to the DOHA - and that as a result they change their methods.
# c_b 2013-08-31 17:59
Here here, I could not agree more.

In the area where I practice, Hunter Medicare Local (ML) has approached practices to have the practice staff “sign on” patients to the pcehr. I believe it also includes completion of an identity check. For doing this, practices receive a one off payment of around $1-2k as an incentive or payment to offset costs.

As a clinician who strongly supports ehealth this ML action seems almost unethical. I have no wish to have a patient in my waiting room put under any need to sign on. Some weeks before the ML announced this process I had already created a simple letter template indicating that the patient may wish to consider registering for a eHealth record but to talk to the helpline and see the web site to become familiar with the systems that they are signing onto. Patients have signed on and have declined to sign on from this simple letter action.

The eHealth system does not have a capacity for a practice “test patient” for each surgery, so in many instances doctors have never seen or experimented with the patient control or access systems. Hence even being able to provide on screen illustration is greatly restricted. So realistically how can the clinician facilitate consent? Clinicians and ML presenters keep telling me, and conference audiences, how the best way to do it is “to create your own personal eHealth record file then learn what to do.” This in itself has some additional irony, in that doctors are recommended not to “self treat and self care” but have a personal GP. How then are doctors uploading and populating their own file?

The system is run by the Commonwealth, it is a Government process, it is Government that should be responsible for consent, the eHealth record is not a medical procedure!. I am sure there will be other views but I suggest that ML is abusing the trust of its GP’s by encouraging this activity. If other systems to benefit health were put in place on mass such as;
sign lonely patients onto Facebook, sign people onto private health insurance to avoid horrendous public hospital delays, sign my patients onto the local gym, would this be ethical?

I am happy to supportively, suggest patient enrolment onto the system, including disclosing items which need checking (see comments below EHEALTH - WHO IS TO BENEFIT? Pulse IT 9/8/2013) but it is ethically dubious for me to create an environment that has an expectation for sign on . This enrolment fervor is more about “production targets” of ML and Government than good professional medical sense and practice. It is sad that ML clinicians seem to have been sucked into the funding political vortex

Thanks Pulse IT for article

C_b

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