We have had a couple of press releases this week.
First we have this:
Stakeholders give a clear message of support for approach to privacy
7 November, 2008. Privacy challenges around the introduction of an Individual Electronic Health Record (IEHR) can and should be addressed as a matter of priority to advance e-health in Australia. Stakeholders have given the National E-Health Transition Authority a clear message of support for its approach to privacy around the IEHR following the release of the Privacy Blueprint in July.
A total of 37 submissions were received from a combination of health industry peak bodies, consumer representative organisations, privacy groups, vendors and individuals with an interest in e-health.
The general response was positive and most respondents affirmed that appropriate privacy management would ensure that an IEHR was adopted widely and used successfully as a key tool in improving healthcare and health outcomes.
NEHTA Chief Executive Peter Fleming said feedback from stakeholders was extremely valuable.
"We need to know their views and understand how our work in the privacy area can better meet the needs of the healthcare sector and the Australian public.
"As e-health develops we are committed to ensuring that a strong privacy foundation is established for the IEHR and all other related e-health initiatives," he said.
A report on feedback to the Privacy Blueprint has been compiled which outlines the next steps for NEHTA in furthering work on privacy and e-health initiatives.
Issues identified by respondents that require further consideration include:
- Governance - Strong governance arrangements are important for overseeing and managing an IEHR.
- Sensitivity labels - Overwhelming support for a ‘sensitivity' label function.
- Individual control over health information - Voluntary participation is viewed as a key to success of the IEHR.
- Authorised and nominated representatives - Suggestions for how an IEHR might address and/or implement representative mechanisms, including those relating to the needs of carers, children and young people.
- Audit functionality - An effective audit function is needed to ensure consumer confidence in the IEHR system.
- Secondary uses - Support for certain types of secondary use, such as research, and improved public health and safety - excluding direct marketing and use of health information by employers or insurers.
- Further issues - Several other key issues emerged including: data integrity and control; provider participation in the IEHR; and the importance of training and community education.
The issues raised and recommendations received from the submissions will influence future work on an IEHR. Ongoing engagement on the detailed design and the implementation approach will continue. All submissions and the Privacy Blueprint for the Individual Electronic Health Record - Report on Feedback is available at www.nehta.gov.au
I have browsed this document and my main impression is one of déjà vu! Pretty much all the issues that have been canvassed over the last two or so years and the three or four previous papers seem not to make any obvious progress.
Why this is so is, I believe, because the whole idea of the IEHR remains nebulous and vague and lacking in what I would term ‘design detail’. It will only be possible to form clear views once there is a real, in depth, description of just what the IEHR is, how precisely it will work, who will use it and what controls and governance etc are proposed. To date we have vagueness triumph over clarity in my view – accepting, of course, that are real doubts in my mind if the whole proposal is practical and implementable. Only, again, with the details of the proposal, will a formed view on that question be possible.
I note that at the time of typing this the actual submissions do not seem to be online (Sunday 9, November) – and I must say I struggle to understand just why any submission would be confidential on such a general and personally totally non threatening topic. Surely just having the submissions be accepted anonymously would be more than enough?
The time has come for NEHTA to fully disclose just what it is proposing and then seek comment and input on the whole IEHR project – privacy included.
Second we have:
Australians show strong support for e-health records
7 November, 2008. A national opinion poll has shown Australians support the introduction of an Individual Electronic Health Record (IEHR) and would agree to their medical records being included in the service.
The poll, conducted on behalf of the National E-Health Transition Authority (NEHTA), showed 82 per cent of respondents believe an IEHR would save lives and improve health services by having important medical information immediately accessible.
In addition 77 per cent of the 2,700 people surveyed across Australia indicated they would want their records added to the service.
"This research confirms Australians endorse the use of electronic health records if they are introduced with all the necessary levels of privacy and security," said NEHTA Chief Executive Peter Fleming.
The poll also indicated that Australians feel strongly about choice in relation to the IEHR.
Seventy eight per cent of respondents believed the IEHR service should be voluntary.
Security and safety around the electronic storage of medical information was also a key consideration with 79 per cent indicating it was important any future IEHR offers patients the ability to quarantine sensitive or very personal medical information.
An IEHR would be achieved by a national standardisation of technologies which would enable doctors, hospitals, clinics, laboratories, General Practitioners and pharmacies to electronically send and receive accurate clinical communications, irrespective of the State or Territory in which they are located.
NEHTA is currently working on projects such as unique healthcare identification, clinical terminologies and message security, which will form the foundations of a private and secure IEHR for the future.
There is press coverage here:
Karen Dearne | November 07, 2008
THE federal Government has a strong mandate to introduce individual e-health records for Australians, a consumer poll on behalf of the National E-Health Transition Authority (NEHTA) has found.
The survey of 2700 people conducted by UMR Research found that 9 of 10 respondents in all states want the Commonwealth to manage the deployment and operation of an e-health record system. The same proportion supported the introduction of new privacy laws to increase protection of personal medical information.
UMR also found that 97 per cent of respondents thought it was important for people to know who has accessed their records and that 79 per cent believed it was important or very important that sensitive or personal information be quarantined from general view.
The poll also found that 77 per cent would want their records, and their children's records, added to a shared electronic system.
This is really a rather sad little well spaced 5 page report which claims to be the result of surveying 2700 people on their views of the IEHR.
The results are well worth a read – but would be infinitely more valuable if the responses to each of the questions (and what was asked in each question) was provided. To provide such a brief summary – when it is clear the results are available in considerable detail – merely insults all our intelligence. The 5 page summary should have been followed by 30 pages of detailed information to allow each of us to understand the results properly – given this survey would hardly have cost much less than $100,000 or so.
I really don’t understand why the public – who paid for this – can’t be provided with the details of what was found rather than glossy oversimplified spin. These surveys could help more than NEHTA understand what is needed to build public trust and confidence.
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