Tuesday, December 08, 2015

There Really Seem To Be Some Worrying Process Issues In The Management Of The PCEHR.

This appeared a few days ago:

MPs split on 'opt out' eHealth records

Not all members of parliament’s human rights committee sold on already-legislated eHealth changes
Members of the Parliamentary Joint Committee on Human Rights (PJCHR) have been unable to agree on whether some measures contained in legislation revamping Australia’s national eHealth record were justified.
A report issued in October by committee queried a number of aspects of the Health Legislation Amendment (eHealth) Bill 2015.
In its latest report, tabled yesterday in parliament, the committee considered responses from the health minister, Sussan Ley.
The bill was endorsed by a report from the Senate's Community Affairs Legislation Committee, although during that committee's inquiry some privacy advocates indicated their opposition to the legislation.
The legislation implements recommendations from the 2013 review of the Personally Controlled Electronic Health Record (PCEHR), including renaming the record to 'My Health Record'.
The legislation allows the health minister to apply opt-out participation to particular areas.
The changes are intended to enable trials of approaches intended to boost participation in the system, as well as lay the basis for a potential wholesale shift to opt-out.
Trials of an opt-out approach to signups for the national eHealth record will be held in parts of Queensland and NSW, Ley has revealed.
"One of the great criticisms of Labor's model that was that it could not be used unless a patient signed up, rather than an all-inclusive system that simply gives those consumers who do not want their medical history made available the option to opt-out," Ley said in remarks prepared for a National Press Club address in October.
The trials will begin early next year and involve around 1 million people.
Although Ley’s responses to queries from the PJCHR were accepted by some committee members, in the view of others the legislation to enable opt-out is incompatible with the right to privacy.
More here:
Here are the recommendations from the Committee (page 74):
2.1                    The committee considers that the automatic inclusion of the health record of all Australians on the My Health Record register engages and limits the right to privacy in article 17 of the International Covenant on Civil and Political Rights.
2.2                    Some committee members consider that the minister's response has demonstrated that the bill seeks to improve health outcomes and promotes the right to health and so consider the measures are justifiable.
2.3                    Other committee members consider that the minister's response has not adequately addressed the committee's concerns in relation to this right. For the reasons set out above, those committee members consider that the legislation is likely to be incompatible with the right to privacy and recommend, in order to better protect the right to privacy, the legislation be amended:

  • to set out the detail of how and when a health care recipient will  be notified that their records will uploaded onto the My Health Records system; 
  • to require that healthcare recipients be given a reasonable amount of time to decide whether to opt-out of the My Health Records system; 
  •  to provide that healthcare recipients are able erase their record from the register at any time; 
  •  to require that if the minister applies the opt-out model to all healthcare recipients in Australia, the minister must consider the privacy implications of this decision and be satisfied that healthcare recipients in the trials were given an appropriate and informed opportunity to opt-out.

It is going to be very interesting to see if the Minister actually responds to the Departmental ‘stuff up’ of getting legislation passed before the PJCHR actually responded and if we see some amendments in the New Year.
We now know the Legislation is flawed and the Committee,  as a whole, recommends it be fixed.
Over to you Minister.
David.

8 comments:

Anonymous said...

The minister's drunk the Kool-aid. She's the puppet of the long-time-serving, street smart, but otherwise uneducated public servants.

Anonymous said...

I wonder if the committee was aware of the now apparent harvesting of this opt-out information or have they been mislead to some degree or at best not been provided all the information to allow a considered and informed response. Will this secondary use of personal health information also be advertised clearly to consumers in the trials?

Don't go down as yet another misleading politician health minister, don't tar the good work being done in woman in leadership

Anonymous said...

Deceitful, incompetent or just plain tricky?

The following reflects absolutely the bureaucracy's culture in that that those who drafted The Bill (under instruction from the Department) left it to the Committee to point out and have corrected this intentionally blatant omission: ..... to provide that healthcare recipients are able erase their record from the register at any time.

It is this sort of stupidity by the powers behind the PCEHR that has left it to thrash around in a swirling cesspool of incredulity.

Does anyone disagree?

Anonymous said...

Deceitful, incompetent or just plain tricky?

all the above

Anonymous said...

But is it legal? This seem extremely suspicious.

Anonymous said...

Given the previous indications that the data in the PCEHR will be used for other than direct clinical care (sold to pharmaceutical companies, research, etc) in some highly questionable "de-identified" form, will consumers be informed that their data as been used in such a way? There is an access audit trail you can see, but will uses such as this be included, and, if so, will it include details about where the data went?

Given the above, I would say "no".

Anonymous said...

"Given the previous indications that the data in the PCEHR will be used for other than direct clinical care (sold to pharmaceutical companies, research, etc)"......and your evidence that the Commonwelth Gov would do such a thing? Yes I acknowledge that the privacy statement surrounding PCEHR includes the possibility of this, however, current information held by Medicare, PBS, DVA, and so on, can be used for the very same thing.
Does the above imply that the current repository of my clincal information, i.e. my doctor, who currently "owns" my medical information won't do the same?
Ultimately, my experiences in the communication between healthcare providers between general practice and hospitals, between hospitals when a patient is admitted and/or transferred to more than one , and worse still, multiple admissions at the same hospital, has destroyed my confidence in the current "system" sans PCEHR.
Furthermore, I do subscribe to the notion that I should own my medical records, be in possession of them electronically, and decide who has access to them.

Bernard Robertson-Dunn said...

"Given the previous indications that the data in the PCEHR will be used for other than direct clinical care (sold to pharmaceutical companies, research, etc)"......and your evidence that the Commonwealth Gov would do such a thing?

http://thenewdaily.com.au/news/2015/12/08/fears-ehealth-data-hacked/

"Despite direct questions from The New Daily, neither the Health Minister nor the Health Department would rule out the possibility of the data becoming available to insurance and pharmaceutical companies."