Letter to the editor: eHealth - who is to benefit?

eHealth Out of Order

I snapped this shot as the truck removed the eHealth computer kiosk machine from its former owner - a Medicare Local. The image is apt. Moments before this photo I was consulting with the hardworking manager of a group home. The home is operated by the State and houses half a dozen ageing intellectually disabled persons. I have been privileged to be their GP for over a decade. Their parents, those which remain alive, and contactable, are elderly themselves and have no need for computers and “silly what not”. Some months back I spoke with the manager of the advantages the eHealth record might hold. It is a no brainer, a health summary may assist everyone if one of these persons is unwell and transported by ambulance to the emergency department.

So, why the image? Well, after a multitude of phone calls it appears the intellectually disabled persons cannot give consent. If they cannot give consent, then they cannot have a eHealth record initiated. The solution is easy - “have their legal representative draw up the powers of attorney” and then lodge this with eHealth.

It seems to escape attention that the house manager has responsibility for these persons finances, communication, transport, medications, State departmental health records, clothing , and food. But the manager cannot even initiate the eHealth record. Clearly a mistake has been made.

The case is not an isolated “error”. I have a second example. A gentleman’s wife attempted to register her dementing husband for a eHealth record. I supplied a letter indicating my knowledge of the couple and the need to have Mr Jones registered. Mrs Jones ended up paying the family solicitor for the necessary additional documents.

Ironically it seems that for a billion dollars worth of eHealth each Australian who has a dubious consent capacity is required to personally organise their solicitor! I think we can understand the issues of privacy - the need to scrutinise who can SEE the content of the file. However in this circumstance, who is protected by also obstructing the creation of the eHealth record? The creation of the file allows the information to be available to medicos treating the intellectually disabled.

A very stark contrast arises. If I, as a competent adult initiate my file creation, what protection is there that an employer or insurer cannot see the file? Medicare Locally are enthusiastic to sign people on, going as far as incentives and GP staff training to request I “consent”. But it remains unclear - will my employer or insurer have their doctor accessing my file? Of course this cannot happen, unless, I “consent”. Can I be asked to “consent” that the employer’s doctor view my eHealth record as a part of a pre employment medical? I can decline without prejudice, can’t I?

Dr Craig Barnett
B Med (Hons) B App Sci FRACGP

Posted in Australian eHealth

Comments   

# Richard 2013-08-12 08:23
Is the magical National Disability Support Program connected to this or should it now be called upon address the problem?
Not having acceptable processes in place for eHealth sign up and as a result simply remove the eHealth Kiosk rather than fix the process seems to have marginalised a group of society who might not be in a position to readily communicate life threatening information in a timely manner to any treating Doctor and as Dr Barnett has pointed out there are many other benefits probably now denied to these people.
Fortunately they still have the Manager who diligently and importantly maintains their Health Records in manual format.
Another clear example where the focus appears to be on the money and not the patient - the permanent Head of NSW Dept of Health is failing its Minister, politicians and society - what say you, the NSW Dept of Health?
# Jennifer 2013-08-13 11:03
The same situation exists for residents of aged care facilities that have diminished capacity or for that matter people still living at home that have enduring power of attorney/guardi nship or a 'person responsible' for them. The process of getting the necesary documentation for Medicare is a lengthy and laborious process often meant to be undertaken by family members or carers which just makes this eHealth record another burden for them.
Lets also not loose sight of the fact that this group of residents, elderly peole living at home and intellectually disabled persons are a targeted cohort of the Department of Health and Ageing however they are almost impossible to get signed up.
As Dr Barnett rightly pointed out the 'person responsible' can currently sign all other documentation except an application for an ehealth record.
I agree, clearly there has been a mistake and surely common sense needs to prevail and let GPs, Medicare Locals and Aged Care Facilities connect these people to the eHealth system and their health practitioners to facilitate better health outcomes for them.
# Ahcsa Ehealth 2013-08-13 12:03
Also a problem for children who, for whatever reason, have as their primary carers persons other than those who have the child on their medicare cards. Foster children and many aboriginal children cared for by non-nuclear family members are increasingly falling through this gap. The carers of these childrenoften do not have the knowledge, support or wherewithal to get the necessary documentation to alow these children to be registered. And those of us supporting pcehr registration do not ourselves truly know the procedures necessary, the hoops to jump through, to support these families and children to be registered for a pcehr. Again, like the aged care situation, it is sadly ironic that registration seems to be most difficult for those amongst the most marginalised populations of society who would benefit the most from having a shared care record.
# TIM S 2013-08-19 10:32
Agree with the frustration but it can be done and no need to pay lawyers to get a power of Attorney. My mum is 90 with advanced dementia and in residential aged care. I have set up her PCEHR and it is linked to mine so I can access her's direct. What was required was a letter from her GP confirming the dementia and lack of capacity and that I was the person responsible, a letter from the RACF confirming the same and an application from me.

Re Dr Barnett's question can his employer or employer's insurer see his record. As neither is treating him in a health professional/pa tient relationship and neither will have a HIPO or HIPI - then no they can't. If a health professional working for either has a HIPO or HIPI then technically they could - but this would be an offence under the legislation and a breach under the relevant national registration board code. In health we rely a lot on the professional integrity of our colleagues and whether there is a PCEHR or not, this won't change!
# c_b 2013-08-31 16:59
“Tim S” I note your comments, I am pleased that the registration of your relative was straight forward, as it should be. The reason for the discrepancy remains a mystery; why you experienced no barriers as opposed to the scenarios mentioned in the letter. Mrs Jones was in fact provided with a letter about dementia and care arrangements etc just as you did in your situation. So should you have “contacts” in the Department who can clarity why 2 different rules exist, this would be helpful. I note too that “Jennifer” implies a similar experience though I was not entirely clear (from her comments) if she had personally experienced the same obstruction.

There is a statement from “Tim S” that in relation to the PCEHR only those treating the consumer can see the record. This would be my WISH too. I am certainly no legal expert – so please, I am open to correction. If you consult the legislation you will find that if the patient gives consent then anyone with authorization to enter the PCHR can see that patient file. (see http://www.comlaw.gov.au/Details/C2012A00063/Html/Text#_Toc327957207 Part 4 item 66 covering “use and disclosure with consumer consent” ). At this point I am not aware of any clause which ensures the PCEHR information is only for use of “personal treatment / health delivery” (I sincerely hope I am proved wrong!) . Referring to the govt own disclosure information;
Who has access to my eHealth record?….. You can also share your health information with family members, carers, or other trusted people if you wish. http://ehealth.gov.au/internet/ehealth/publishing.nsf/Content/faqs-consumer-privacy
Hence it is likely that as part of a pre employment medical or insurance process companies may “ask” the prospective employee / customer for “consent” to view their PCEHR. There is a historical point of context here; some years back I was extensively involved in a forerunner of the PCHER, NSW Health Health-e-Link. A key message from the consumer and clinician forums was the purpose of such a record was for the aide of “patient care”, not a means for others to in some way request a “consent” to go on a fishing expedition or for big brother to “check up” on you. At the end of the day any record (medical or otherwise) is likely to need disclosure if serious circumstances warrant it, courts authorize these “circumstances” to enforce release of information where circumstances justify this intervention. In the current PCEHR situation there appears no protection with respect to the circumstances under which a patient can be “asked” to “consent” to access. Hence if you work in industry and the pre employment medical assessment includes consent for PCEHR view, how does our patient respond; A “no consent” or privacy lock “no view” may trigger at least suspicion or at worse maybe it could render the person ineligible for employment.?

My anecdotal experience in our area is: Medicare Local staff signing people up to the PCEHR have not advised clinicians or consumers about this scenario.
Welcome any comments or thoughts please,

Craig
# Tim S 2013-09-01 04:32
Hi Craig,
Thanks for your comments. Medicare correctly requires to be satisfied that a person seeking to create a PCEHR for another person is authorised to do so. While. Valid power of attorney makes this easier, often as with my mother, there was not one in place before her dementia advanced. Under state guardianship legislation, the "person responsible" (NSW term) can act for the person with dementia . That is what I did.

Only health professionals and their health service organisations who have a HIPI or HIPO and have signed a participation agreement can acces the clinical information in the PCEHR (apart from the break glass in an emergency exception). In relation to the consumer's own information that they have entered it is up to the consumer who they give access to, which is fair enough.

In relation to insurance companies, two points. First they already can ask for the information direct from the applicant and/or require the applicant to authorise their GP or other health professional to provide the info,ration to the insurer. So PCEHR doesn't change anything here. Second, the information on the PCEHR is not new clinical information, it is either copies of existing information (eg path results) or a summary of what the GP, hospital or other health professional already has. So again PCEHR doesn't change anything here..

So again, let's not worry about things we don't need to worry about. I was a member of an advisory committee to the ALRC on genetic testing a few yeas ago and the power of insurance companies to ask for genetic test results was an issue. The LARC recommended that the government and the Insurance Council come up with guidelines on what was appropriate for an insurer to ask and what was not.

I have medical and law degrees by the way.
Cheers
Tim

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