Wednesday, June 10, 2020

Now Here Is A Real Blast From The Past. Progress Seems To Have Been Rather Slow!

For some reason this very old abstract popped up on a routine search.
J Am Med Inform Assoc
Jul-Aug 2014;21(4):707-13.
doi: 10.1136/amiajnl-2013-002068. Epub 2014 Mar 20.

A Personally Controlled Electronic Health Record for Australia

Christopher Pearce  1 , Michael Bainbridge  2
Affiliations
Free PMC article

Abstract

Objective: On July 1, 2012 Australia launched a personally controlled electronic health record (PCEHR) designed around the needs of consumers. Using a distributed model and leveraging key component national eHealth infrastructure, the PCEHR is designed to enable sharing of any health information about a patient with them and any other health practitioner involved in their care to whom the patient allows access. This paper discusses the consumer-facing part of the program.
Method: Design of the system was through stakeholder consultation and the development of detailed requirements, followed by clinical design assurance.
Results: Patients are able to access any posted information through a web-accessible 'consumer portal.' Within the portal they are able to assert access controls on all or part of their record. The portal includes areas for consumers to record their own personal information.
Discussion: The PCEHR has the potential to transform the ability of patients to actively engage in their own healthcare, and to enable the emerging partnership model of health and healthcare in medicine. The ability to access health information traditionally kept within the closed walls of institutions also raises challenges for the profession, both in the language clinicians choose and the ethical issues raised by the changed roles and responsibilities.
Conclusions: The PCEHR is aimed at connecting all participants and their interventions, and is intended to become a system-wide activity.
Here is the link:
https://pubmed.ncbi.nlm.nih.gov/24650635/
For fun there are also some contemporaneous similar references.

Similar articles

·         A pilot study on the views of elderly regional Australians of personally controlled electronic health records.
Kerai P, Wood P, Martin M. Int J Med Inform. 2014 Mar;83(3):201-9. doi: 10.1016/j.ijmedinf.2013.12.001. Epub 2013 Dec 17. PMID: 24382474
·         The Australian general public's perceptions of having a personally controlled electronic health record (PCEHR).
Andrews L, Gajanayake R, Sahama T. Int J Med Inform. 2014 Dec;83(12):889-900. doi: 10.1016/j.ijmedinf.2014.08.002. Epub 2014 Aug 15. PMID: 25200198
·         A qualitative study of Australians' opinions about personally controlled electronic health records.
Lehnbom EC, McLachlan A, Brien JA. Stud Health Technol Inform. 2012;178:105-10. PMID: 22797027
·         Knowledge and attitudes regarding the personally controlled electronic health record: an Australian national survey.
Lehnbom EC, Brien JE, McLachlan AJ. Intern Med J. 2014 Apr;44(4):406-9. doi: 10.1111/imj.12384. PMID: 24754689 Review.
·         The personal health record: consumers banking on their health.
Ball MJ, Costin MY, Lehmann C. Stud Health Technol Inform. 2008;134:35-46. PMID: 18376032 Review.
It is fun to read these references and see how people were quite sceptical even then.
On the main abstract it is interesting to note that the PCEHR was never distributed as the abstract says – rather it was always a centralised mega- database.
Also one wonders just how much design control was in the hands of clinicians given the various design decisions that were taken – e.g. patient ability to conceal information etc.
Do you think the PCEHR / #myHealthRecord has delivered on its apparent aims so many years later?
David.
at

1 comment:

  1. Bernard Robertson-DunnJune 10, 2020 4:58 PM

    To expand on your observations:

    Just looking at the Abstract:

    "On July 1, 2012 Australia launched a personally controlled electronic health record (PCEHR) designed around the needs of consumers."

    The only "needs of consumers" were those that were assumed, or proposed by others. Nobody actually asked large numbers of consumers.

    "Using a distributed model"

    No it wasn't. The repository model was never implemented

    "and leveraging key component national eHealth infrastructure,"

    At least two key components of the essential eHealth infrastructure were never, and have never been implemented - NASH and interoperability (that was required for a distributed model

    "the PCEHR is designed to enable sharing of any health information"

    designed maybe, implemented - no.

    "about a patient with them and any other health practitioner involved in their care to whom the patient allows access."

    The default is any health practitioner involved in their care. The access controls only work on institutions although everyone can be prohibited unless explicitly permitted, an onerous procedure, most patients would be uncomfortable utilising.

    Then there are the weasel words further down:

    Discussion: The PCEHR has the potential ....

    Potential, that's always a good qualifier.

    Conclusions: The PCEHR is aimed at connecting all participants and their interventions ...

    Aimed but missed

    And what "all participants and their interventions" means I really don't know.

    The way POTUS uses "fake news" and completely and blatantly denies reality, you would think he'd learned it from all those eHealth folks down-under four years earlier.

    I know some will say, just get over it, it's all old news, but the ANAO fell for the party line last year.

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