Sunday, July 19, 2015

NEHTA’s Chairman Beats The Drum Of E-Health. Gets A Trifle Carried Away I Would Suggest!

This appeared a few days ago.

Get elderly patients online

Charlotte Mitchell
Monday, 13 July, 2015
GPs should routinely ask their older patients to set up a personally controlled electronic health record to help them share medical information with their families, according to the chair of the National E-Health Transition Authority.
Dr Steve Hambleton, who is also a Queensland GP, said that in his experience only a couple of patients have ever declined the chance to register for a personally controlled electronic health record (PCEHR).
“From a GP point of view, we do want a patient to share information with their family, especially as they get older and develop more illnesses”, Dr Hambleton told MJA InSight.
He was commenting on US research that found elderly patients often shared control of their personal health information and decision making with family and friends, but the sharing involved complex issues, even under the most well meaning circumstances. (1)
The research was based on group discussions with patients aged over 75 years and with individuals who assisted an older family member, finding broad support for sharing personal health information with caregivers if it would benefit the older patient. However, concerns were raised about autonomy and control, respect for preferences, micromanagement and snooping, and unintended information disclosure.
An accompanying commentary said the study highlighted the importance of developing user-centred software that met the information sharing needs and preferences of older patients and their families. (2)
Dr Hambleton told MJA InSight that Australia’s approach to information sharing was “the envy of nearly every other country in the world”.
He said the PCEHR allowed a patient to give a nominated family member, or an authorised representative, access to their medical information.
“The PCEHR is an extraordinary achievement. It’s an easy opt-in, opt-out resource that has standardised information, standardised nomenclature, standardised medical terminology”, he said.
Lots more here:
Before discussing elders and the PCEHR let is consider these three paragraphs - the bold especially.
“Dr Hambleton told MJA InSight that Australia’s approach to information sharing was “the envy of nearly every other country in the world”.
He said the PCEHR allowed a patient to give a nominated family member, or an authorised representative, access to their medical information.
“The PCEHR is an extraordinary achievement. It’s an easy opt-in, opt-out resource that has standardised information, standardised nomenclature, standardised medical terminology”, he said.”
I look forward to the list of countries that have expressed envy of the fiasco that is the PCEHR and as for the PCEHR being an “extraordinary achievement” I am just left wondering if the NEHTA Chair has been spending too much time listening to the NEHTA and DoH propagandists. What rubbish!
Here is a report covering the study mentioned by Dr Hambleton.
Posted July 10, 2015 - 4:33pm

Study shows elderly want to control what health information family sees


By LISA RAPAPORT
REUTERS
Elderly patients may be willing to let family members access their medical records and make decisions on their behalf, but they also want to retain granular control of their health information, a study suggests.
“Respecting and preserving the autonomy of the elder is critical,” said lead author Dr. Bradley Crotty. “Elders and families should have honest discussions about preferences for information sharing and decision-making, and share these conversations with healthcare providers.”
To understand how patients over 75 and the family members who care for them think about sharing medical information, Crotty and colleagues held separate focus groups in 2013 and 2014 with 30 elders and 23 caregivers.
The elderly participants came from different residential settings - including assisted living and skilled nursing facilities - run by Hebrew Senior Life, an academic health care organization affiliated with Harvard Medical School.
Caregivers were adult children, spouses, or other relatives of residents, and they didn’t have to related to the elderly subjects in the study.
The majority of study participants were white. Most residents and caregivers in the study were women and had college or graduate degrees.
Most of the elderly patients were older than 81. A third of them rarely, if ever, used the internet, while 60% went online daily or almost every day.
Many differences of opinion emerged as the two groups talked about sharing access to the elderly patients’ health records, the researchers reported online July 6 in JAMA Internal Medicine.
Caregivers felt that having information would decrease their stress, but patients wished to maintain control of the information to avoid burdening their children or loved ones with their illnesses and problems.
Many family members also thought having access to elderly patients’ records would make it easier for them to help coordinate care, appointments and communications with the rest of the family. But patients worried that this access would cause anxiety in their children.
The more independent elderly patients didn’t like the idea of losing control of their decision-making abilities and having to rely on their children. They were willing to share information, but reluctant to cede control of the information flow or give up the ability to make their own choices about treatment.
If they did have to give up control, elderly patients wanted this to happen gradually, starting perhaps by only sharing information in an emergency rather than as a routine on a day-to-day basis.
More here:
The issue with this from the perspective of the PCEHR is the complexity of granting access of others to your PCEHR (If you have one) and the fact that the access is rather binary - either your representative can see all of the record or basically no record.
The complexity can be read about from these links:
Here is an explanation of the PAC.

What is a PAC

Personal Access Code (PAC) is a code generated by you in the eHealth system and that you will give to your Nominated Representative and/or Full Access Nominated Representative to access your eHealth record.
(I can see many older citizens going through this!)
A moment of thought will see just how potentially complicated, open to abuse and privacy invasive the PCEHR approach to all this might be.
Sharing health information with family can be both very good and potentially very harmful - and requires a great deal of individual thought as well as extremely granular control in the hand of the individual to decide what the family can access or not! It is clear individual control is something many elders want. As for how different providers fit in to all this there is a set of even more complex discussions waiting!
Reading the now obsolete Concept of Operations of the PCEHR from late 2011, I am not at all sure what older citizens are likely to want and need is even possible - let alone in existence at present!
Capacities of this sort need to be designed in from the ground up I believe.
David.

7 comments:

Bernard Robertson-Dunn said...

Dr Hambleton told MJA InSight that Australia’s approach to information sharing was “the envy of nearly every other country in the world”.

Truthiness: The quality of stating what one wishes or feels to be true instead of what is actually true.
http://nws.merriam-webster.com/opendictionary/newword_search.php?word=truthiness

Anonymous said...

Absolutely Bernard.

The only evidence for Dr Hambleton's view is Dr Hambleton himself, and as he has so little experience in eHealth, information technology as applied to health, and no real grass roots practical experience in this highly complex sector, it is reasonable to deduce that Truthiness prevails in Dr Hambleton's world for there is no other reference source anywhere in the world to support his view that would stand any scrutiny.

Anonymous said...

I have no problem giving anyone who asks access to my PCEHR.
Why?
Because there is nothing in it. It's empty. Despite being a diabetic, my PCEHR has not a single lab result, medical imaging report, or GP note.
I signed up right at the start, hoping that it would be useful. So far, all the activity has been my department testing IHI recovery and matching systems.

Anonymous said...

July 20, 2015 8:51 AM said ... PCEHR -- there is nothing in it. It's empty. Despite being a diabetic, my PCEHR has not a single lab result, medical imaging report, or GP note.

I would submit that Madden and Hambleton don't know that. They are filling management roles. Their job is to listen to those who are responsible for designing, developing and deploying the PCEHR. They probably don't even have a PCEHR themselves, or if they do they haven't looked at it, or if they have looked they haven't understood that what they are looking at is nothing of any use to anyone.

In their managerial roles they are managing based on what they are being told by those reporting to them. They are not checking the veracity of what they are being told, or they don't know how to, which is probably more likely. In my experience this is usually the root cause of why massive IT projects, like the PCEHR, fail miserably at great cost.

Anonymous said...

Another example of managerialism leading us off into the weeds. This idea that "I can manage anything" is an example of the Hubris that infects the public service in particular. Its not working and it will never work and his comments just show how clueless and out of depth he is. The team that reviewed the PCEHR, which he was a part of, had a similar lack of skills. Imposing non-solutions on the medical profession will be a hard sell, even for an Ex AMA president. There are very few individuals with the breadth of IT and medical knowledge required to advance eHealth. What we need is one of those people to be allowed to kill the PCEHR and start at the grass root quality and compliance level while being shielded from the politics for 5 years. At the moment we have "Managers" playing political games who are devoid of any technical or domain expertise. Those emperor's think they have fine clothes. They are damaging good solutions to defend those fine outfits.

Anonymous said...

As a practicing GP of 30+ years it is evident to me that 99% of good medicine involves a patient, a GP and that GP's professional network of specialists - mostly at a local level. It can be a very efficient and nimble system when not weighed down by a micro-controlling bureaucracy.
The burden of dragging this anchor which is the PCEHR will deform general Practice for the next 2 generations if it isn't euthanised urgently.

Karen Dearne said...

Let's see. The review trio had NO real life experience with the PCEHR. Royle's claim to fame is his digital hospital powered by Cerner at some $52m in public cost, which does NOT connect to the PCEHR; Hambleton who is an extraordinarily late-comer to the party, after finding plenty to find fault with during his stint as AMA president, and then there's that chap from the Post Office.

They did however conclude that things needed to change... so why is Hambleton now spouting nonsense about how wonderful the PCEHR is, apparently a miraculous turnaround since he took the NEHTA chair.

Sorry, Steve, you disappoint me.