Sunday, May 27, 2012

The Person-controlled Electronic Health Record. From Recommendation To Reality NOT!

I thought it would be useful to have a close look at where the NEHRS (PCEHR) sprang from and just how poor the thinking around its conception was. Here are the key message and the recommendations of an amazingly short 16 page document (removing the duplicated recommendations) that started all this:
The document is date 30 April 2009 and can be downloaded in full from here:
This document is a late addendum to the Interim Report of the National Health and Hospitals Commission and was released just before the final report in June 2009.

 Person-controlled Electronic Health Records

 Key messages

o   Health care is knowledge intensive. The timely and accurate communication of pertinent, up-to-date health details of an individual can enhance the quality, safety and continuity of health care.
o   Current health information systems are disjointed, which often results in health care professionals operating with incomplete or incorrect patient information. It is estimated that up to 18 per cent of medical errors are a result of inadequate availability of patient information.
o   As technology, work practices and medical knowledge continue to evolve in the coming years, the complexity of health care interactions will become greater, which means the need to document and readily access a patient’s health profile will become more critical.
o   A person-controlled electronic health record would enable people to take a more active role in managing their health and making informed health care decisions.
o   Investment in health IT lags well behind that of other information-centric consumer industries such as the financial and telecommunication industries, which have invested heavily over the last 20-30 years to achieve global connectivity.
o   According to recent research commissioned by the National Electronic Health Transition Authority (NEHTA), 82 per cent of consumers in Australia support the establishment of an electronic health record (EHR).
o   The implementation and widespread use of information technology in the health sector (e-health) is one of the most important enablers of personal health management and quality health care.
o   The overall economic benefit from increased productivity and reduced adverse events that would be achieved with a national individual electronic health record in Australia has been estimated to be between $6.7 billion and $7.9 billion in 2008-09 dollars over 10 years.
o   The protection of privacy and confidentiality is a key factor in winning widespread community acceptance and uptake of electronic health records.
o   Health providers and the IT industry must work together to develop open, nationally-agreed standards for the secure electronic capture and storage of personal health information.
o   The essential role of governments in a new e-health environment is to protect the public’s interest through legislative reform and ensuring people retain control over who has access to their personal health information.
Here are the recommendations.


1. We propose that, by 2012:
  •  every Australian should be able to have a personal electronic health record that will at all times be owned and controlled by that person;
  •  every Australian should be able to approve designated health care providers to have authorised access to their personal electronic health record; and
  •  every Australian should be able to choose where and how their personal electronic health record will be stored, backed-up, and retrieved.
2. We propose that the Commonwealth Government legislate to ensure the privacy of a person’s electronic health data, while enabling secure access to the data by the person’s authorised health providers.
3. We propose that the Commonwealth Government must introduce:
  •  unique personal identifiers for health care by 1 July 2010;
  • unique health professional identifiers (HPI-I), beginning with all nationally registered health professionals, by 1 July 2010;
  •  a system for verifying the authenticity of patients and professionals for this purpose - a national authentication service for health (NASH) - by 1 July 2010; and
  • unique health professional organisation (facility and health service) identifiers (HPI-O) by 1 July 2010.
4. We propose that Australian governments drive the national development of open technical standards for e-health, and that they secure national agreement to open technical standards for e-health by 2011-12. These standards should include key requirements such as interoperability, compliance and security. The standards should be developed with the participation and commitment of industry, health professionals, and consumers.
5. We propose that the Commonwealth Government develop and implement an appropriate national social marketing strategy to inform consumers and health professionals about the significant benefits and safeguards of the proposed e-health approach.
6. We propose that significant funding and resources be made available to extend e-health teaching, training, change management and support to health care practitioners. The commitment to, and adoption of, e-health solutions by health care providers is key to the success of a person-controlled electronic health record.
7. We propose that the Commonwealth Government mandate that the payment of public and private benefits for all health and aged care services be dependent upon the provision of data to patients, their authorised carers, and their authorised health providers, in a format that can be integrated into a personal electronic health record, such that:
  • hospitals must provide key data, such as referral and discharge information, by 1 July 2012;
  • pathology providers and diagnostic imaging providers must provide key data, such as reports of investigations and supplementary information, by 1 July 2012;
  • other health service providers - including general practitioners, medical and non-medical specialists, pharmacists and other health and aged care providers - must transmit key data, such as referral and discharge information, prescribed and dispensed medications and synopses of diagnosis and treatment, by 1 January 2013; and
  • all health care providers must be able to accept data from other health care providers by 2013.
---- End Extract.
With a month to go it is clear we are nowhere near what was envisaged a little over 3 years ago and funded to the extent of almost $1/2 billion 2 years ago.
As you read the document it seems clear to me there is confusion about just what is being recommended and what it will do.
As always the Key Messages includes problems with information access and flows causing problems but totally lacks any clarity on just how much of the problem will be fixed by what is being proposed.
It is always good to also know that 82% of the public support something that they have no clear idea as to exactly what it is - like an EHR and I won’t even comment on the benefits claimed as they were claimed in the absence of any understanding as to what the system might actually do.
As far as the recommendations and the time frames suggested they do seem just a little ambitious (verging on fantasy even). (According the .pdf the author of the document is Peter one Broadhead who is an executive in DoHA who was involved in the NHHRC process but is now not even apparently associated with e-Health (if Google is to be believed) - smart man is all I can say.)
I will note in passing NASH is still not there, identifiers are not used by the majority of patients or practitioners, hospital are not ready to transmit information to repositories and there is hardly any planned personal control of where an individual’s information is held. And just how does one ‘own’ a clinical record that is in the hands of the Government?
Essentially the PCEHR is a thought bubble that has drifted off the reservation and will never deliver what was intended then and even what was planned when funding was allocated. It really is a model bureaucratic implementation fiasco.


Anonymous said...

The National Health and Hospitals Commission made no mention of eHealth maters when they produced their first report. It was not until you and many, many others stressed the central role that ITeHealth had in underpinning the reforms that a supplementary report was prepared in haste and published.

That should have been warning enough that the HHR Commission was ill informed, naive and ignorant of such matters. Yet the supplementary report, like a finger in the air testing the wind, introduced the PCEHR concept with absolutely no substance or evidence or clarity of argument to substantiate their recommendations. More so given that the entire multi billion pound UK ehealth extravaganza was floundering and on its knees at the time. The Chairperson, the entire committee (check out the names), the Departmental head should be flogged in public for allowing this 500 million dollar travesty to go ahead. And they still do not, will not and cannot see that no matter how much more money they throw in the direction of the PCEHR it will still fail. Insanity at the highest level.

Anonymous said...

Anonymous: what blatant codswallop! The eHealth recommendations were in the Executive Summary and were pointed out on this blog at the time.

Dr David More MB PhD FACHI said...

Anon 1 is correct to the extent that in the Initial Report in Late 2008 the NHHRC said they did not yet have a formed view and that more work was needed for the final report.

That work was done and the recommendations (such as they were) made it into the final report.

At the time it certainly seemed like e-Health was an afterthought to the rest of the work - despite the Booz paper that was submitted to the original draft report writers.