Cris Kerr, an advocate for the value of patient testimony, especially around e-Health systems, has responded to Paul Smith’s recent report on the National Health and Hospitals Reform Commission plans. Cris writes:

“I wish to draw attention to the recent NHHRC release entitled, ‘Person-controlled Electronic Health Records’, where on page 14 the following is stated:

‘ … We took the view that people would choose to hold and access their personal electronic health records in a variety of ways, including mobile
devices such as smart phones and secure storage media, and that a market would also develop for provision of secure on-line backup and storage services for people’s electronic health records. A person-controlled approach to electronic health records, along with a distributed repository, helps avoid the risk noted by the Australian Privacy Foundation that: “… a centralised database … requires only a single point of failure to facilitate data breaches and the growing problem of identity fraud.”

25 Companies such as Google, Global Health, and Microsoft are already exploring different approaches to the online storage of
personal health information through services such as Google Health, Hothealth.

The above represents a contradiction. If one provider and one platform presents a single security risk, then multiple commercial providers and multiple platforms present multiple security risks, and hence; the case as presented does not validate delegating the development and operation of Personal Electronic Health Records (PEHRs) to private (commercial) interests and providers.

The NHHRC recognizes the dysfunctional nature of ‘data silos’, yet proposes a ‘data silo’ by recommending PEHRs be developed and operated in isolation, by private providers, and completely separate from our core health system data, which is ‘perceived to be more important’.

If the patient’s experience is being perceived as less important, why?

Why has the potential gain from patient’s contributing to their own core health records been discounted and devalued?

This release provides evidence that the NHHRC attributes zero value to what patients could be contributing to their own core health records, to national health system improvements and learnings, and to the country’s collective research efforts.

Further … commercial providers will expect financial returns on dollars invested in PEHRs.

Commercial enterprises are not charities, and do not provide free public services. They will not be spending money without expectation of a return
on their investments, of getting their money back, in multiples.

How would a commercial provider based in the USA, make money from the personal health records of all Australians? What does the NHHRC think they plan to get out of it?

Could they, as one example, on-sell our collective de-identified health data to health insurers and life insurers; for analysis of patient profiles – to deem who is insurable and who is not – to deem what they’ll pay out on, and what they will not? Could they use the resulting database of Australian members to advertise and sell products produced by other countries, such as drugs?

The NHHRC is recommending patients become nothing more than market research data, and market ‘cash cows’ for commercial providers.

Indeed, sooner or later, everyone who wants to gain access to the proposed ‘commercialised’ PEHRs will be seen as a cash cow and will have to pay for the service – one way or another – even the govt itself, after it finally acknowledges the contained value in patient records, and wants access to the data it gave away.

The term ‘person-controlled’ is a red herring that should not distract from this opposing proposition.

Whilst the release infers patient-centricity; there is a clear contradiction in the recommendation that personal patient experiences and records should be isolated from our core health system.

Whilst offering plenty for commercial interests, this release offers nothing in the public interest.

The NHHRC’s ‘throw it out to the market’ release devalues patients and their experiences, and refuses to acknowledge the value patients could be
contributing to core health system knowledge and learnings.

It divests responsibility, and sentences the patient to a continuation of the status quo – which is more of the same commercial and personal
‘conflict of interest’ that already detrimentally impacts on patient health outcomes, our health system, and our economy.

At best this is a side-way move, and at worst, regression.

In this release, the NHHRC has wiped it’s hands of patients – and patients should in response, wipe their hands of the NHHRC.

• Cris Kerr is the author of  ‘Those Who Suffer Much, Know Much’ which formed part of Case Health’s submission to the NHHRC in 2008.

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