In a service to the e-Health Community the website focussing on consumer e-Health issues – run by the Consumer Centred eHealth Coalition has published a listing of the submissions that have been made public by their authors.
The web site can be found here:
http://www.consumerehealth.org/index.html
The following outlines the positions the coalition is advocating.
Policy Position
Consumer Centred eHealth Coalition
The Consumer Centred eHealth Coalition is a group of non-government organisations concerned about privacy, security and confidentiality issues related to the roll out of eHealth in Australia.
All the organisations in the Consumer Centred eHealth Coalition recognise the importance of the development of a system of electronic health records (eHealth) that can be used by consumers as well as accessed by health professionals and healthcare providers. The Consumer Centred eHealth Coalition recognises the potential benefits of eHealth for maximising patient safety and the quality of health care in Australia.
However, the Consumer Centred eHealth Coalition maintains that there are valid and strong arguments that unless there is consumer confidence in the system, then patient safety will be not strengthened but, rather, will be threatened. If consumers are not confident in the privacy and security aspects of any eHealth regime, they will not participate, or worse, not disclose vital information or simply not tell the truth to protect their privacy.
The Consumer Centred eHealth Coalition is therefore very concerned with the direction of government policy development in this area. Government assurances about patient control and maintenance of privacy of health records in an electronic form are insufficient if there are no proper and effective governance arrangements in place before eHealth reforms are introduced.
The Consumer Centred eHealth Coalition is concerned that policy proposals about eHealth are being rushed into the public arena without adequate consideration of the privacy and security concerns of consumers. This is illustrated by the recent Discussion Paper, Healthcare Identifiers and Privacy, released by the Commonwealth Department of Health and Ageing.
The Consumer Centred eHealth Coalition is concerned that the Discussion Paper suggested that the proposals on identifiers could be put in place before reformed and harmonised privacy laws are in place (as recommended by the Australian Law Reform Commission) and without a legislative framework dealing with privacy and security issues that are specifically required for an eHealth system (as recommended by the Privacy Commission and the National EHealth Transition Authority (NEHTA)). This is not the first time that government has put the ‘cart before the horse’ in this area.
The Consumer Centred eHealth Coalition is also concerned that the community is being asked to respond to Government policy announcements without the vital analysis and information available to Government in the form of Privacy Impact Statements (PIAs). The Consumer Centred eHealth Coalition is aware of at least three PIAs commissioned by NEHTA but not released to the public. The Consumer Centred eHealth Coalition believes that the outcome of debates currently taking place about the structure of eHealth in Australia will affect the health and wellbeing of many future generations of Australians. The Consumer Centred eHealth Coalition strongly believes that the Government must make publicly available all PIAs about eHealth immediately so that the debate about and development of eHealth can be informed and the legislative processes transparent.
This information is found here:
http://www.consumerehealth.org/about_us_2.html
The listing of submissions includes the following:
Publicly available IHI submissions are listed here. Evidently, these will eventually be available at www.health.gov.au
If you'd like to add your submission below, please email us at info@consumerehealth.org and we'll post your link accordingly
- ACHI (The Health College of Health Informatics) ACHI response to AHMAC discussion paper on healthcare identifiers and privacy.
- AMA Submission on Health Identifiers and Privacy
- ANZCA (Australia and New Zealand College of Anaesthetists) Healthcare Identifiers and Privacy Submission
- ANF (Australian Nursing Federation) Healthcare Identifiers and Privacy
- APF (Australian Privacy Foundation) Healthcare Identifiers
- APO Australian Policy Online Healthcare identifiers and privacy
- CHF Submission on the Healthcare identifiers and privacy: Discussion Paper on proposal for legislative support
- CLA (Civil Liberties Australia) Healthcare Identifiers & Privacy Submission
- Dr. Rod Phillips, Chairman, Vascular Anomalies Committee, Royal Children's Hospital, Melbourne Discussion Paper Health Care Identifiers: Submission to the Discussion Paper Health Care Identifiers and Privacy: Proposals for legislative support
- HISA (Health Informatics Society of Australia) Submission on Healthcare Identifiers and Privacy
- OFPC (Office of the Federal Privacy Commissioner) Healthcare identifiers and privacy: Discussion paper on proposals for legislative support Submission to the Australian Health Ministers’ Conference, August 2009
- OVPC (Office of the Victorian Privacy Commissioner) Healthcare identifiers and privacy: Discussion paper on proposals for legislative support
- PIAC, Healthcare identifiers and privacy: discussion paper on proposals for legislative support
- Queensland Council of Civil Liberties, Health Care Idenitifiers & Privacy Regulations, Submission to the Primary and Ambulatory Care Division (MDP1)
- RACP (The Royal Australasian College of Physicians) Submission to the Australian Health Ministers’ Conference on Healthcare Identifiers and Privacy Legislation
- The Law Council, Health Identifiers and Privacy
The page with the current listing is found here:
http://www.consumerehealth.org/ihi_submissions_7.html
The submissions make interesting reading, and while supporting, in general, the need for a consumer and provided identification system, certainly express a range of concerns which need considerable care and effort to address.
Among the points that caught my eye were the following.
The AMA made the very valid point that the administration of the IHI’s could become quite onerous and potentially costly if the impact on providers were not carefully considered and designed.
The ANF raises the interesting issue of allocation of organisational identifiers to people who are locums and temps.
The Consumer Heath Forum is clearly unconvinced the consumer protections will be robust enough.
Many responders point out that the scope of the consultation is artificially limited. This from the Office of the Victorian Privacy Commission for example:
“One of the fundamental components to allow creation and linkage of e-health records is a universal, unique identifier for each individual patient. Without such an identifier, effective linkage will be impossible. Likewise, the privacy risks involved in this identifier are largely, though not exclusively, related to the proposed use and disclosure of the identifier to link e-health records. For this reason, the current discussion, in which the broader privacy issues concerning e-health are expressed to be “not in scope”1 , is somewhat artificial and limited.”
They also pointed out that there were, at least, some concerns regarding the quality of the identification data held by Medicare Australia.
This submission is very detailed and well worth review as is the submission from the Federal Privacy Commissioner.
See here:
http://aushealthit.blogspot.com/2009/08/privacy-commissioner-administers.html
Most responders make it clear that the legislation must be pretty privacy protective to be acceptable.
The Queensland Council for Civil Liberties makes the very good point that it is hard to assess the IHI proposal in the absence of properly understanding the overall planned “e-Health system” – which is secret from all of us.
Overall these submissions make it pretty clear there is a good deal of work to do to design an IHI system that will be generally acceptable.
The draft legislation will be very interesting indeed when it finally surfaces.
David.
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