It seems more than those who read this blog (and have made submissions to the NHHRC) have noticed there are some rather dodgy parts of the National Health and Hospitals Reform Commission (NHHRC).
From the excellent Crikey (www.crikey.com.au) health blog
We find the following:
May 27, 2009 – 8:41 amCroakey
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.
Much more here:
Allowing for the fact that there are way more than 25 different commercial organisations looking at PHRs Cris makes some good points.
As I have pointed out in my submission this all has the look of an attempt to reframe this e-Health problem as one the patient has – and not one that should be addressed coherently by the health system as a whole – being provided with some quality leadership from Government. This of course has been much lacking to date.
Read and enjoy the perspective offered from a consumer and patient advocate.