Sunday, May 08, 2016

Parliamentarians Reveal Just How Little They Really Understand About E-Health. Magical Thinking In Spades!

Just before the election was called the House of Representatives released the results of an enquiry on Chronic Health Care.
Here is the full title and link:
Report on the Inquiry into Chronic Disease Prevention and Management in Primary Health Care
5 May 2016
The bits that seem relevant to e-Health and myHR seem to be as follows:
Telehealth and eHealth Support
4.1                   The importance of telehealth and eHealth initiatives, especially to rural, remote and low-mobility chronic disease patients, is a focus for many health care providers and commissioners.
4.2                   Programs such as the Royal Flying Doctor Service’s ‘Medical Chests’ program allow patients to access the services they would not normally be able to access easily. The Medical Chests program allows for pharmaceutical dispensing for inflammation, wound care or antibiotics via caches of supplies and specialised telehealth consultations to aid in dispensing these pharmaceuticals in specific circumstances.
4.3                   Innovative programs and services using telehealth and eHealth support, such as linking in multidisciplinary teams to rural cancer centres is essential to coordinating the chronic disease management of affected rural and remote populations.
4.4                   Simplified video or telephone consultations for disease management, such as ‘home monitoring, coaching, video consultation appointments and home medication management’ is a key benefit that can be realised in the delivery of health care via eHealth initiatives.
4.5                   eHealth support in the form of websites that allow for the convenient delivery of relevant information or secure messaging between providers of relevant records or patient information are essential to diversified health care delivery.
4.6                   eHealth records, such as the expanding ‘My Health Record’ initiative are also an important component of diversified and supported health care management.
Data Registries and eHealth Records
4.1                 Regardless of the expansion of the services and coordination of chronic disease care, without the appropriate data, records and patient information, both for care and evaluation and research needs, the fragmentation of chronic disease management in Australia will continue.
eHealth Records
4.2                   While primary health care, especially general practice, is a technologically advanced sector of society, the same cannot be said for allied health providers, specialists and surgeons. In 2012 only approximately 37 per cent of specialists and 22 per cent of surgeons relied on computerised patient records.
4.3                   Similarly, even though general practice do generally use electronic patient records, there are still multiple proprietary systems used and on the market. It is for this reason that the Australian Government and state and territory governments established the National Electronic Health Transition Authority (NeHTA) in 2005 to help promote eHealth initiatives and create standards for the health care sector to adopt.
4.4                   These standards and their application to patient records aid in the connectivity required for multidisciplinary and coordinated care. The Health Network Northern Territory highlighted the importance of eHealth in a diverse community:
Given the large geographical size of the Northern Territory, increased access to eHealth technology will greatly improve the prevention and management of chronic disease. The use of eHealth has been demonstrated internationally to decrease the administration burden of health care service delivery, improve the quality of care, increase efficiencies and encourage patient self- management. Best practice includes an electronic patient record, electronic prescribing and medication administration, telehealth services and secure message services for health professionals.
4.5                   The establishment of the Personally Controlled Electronic Health Record (PCEHR) in July 2012, now the My Health Record, has enabled a universal platform for the storage and management of health information about patients in Australia and placed the control of that information with the patient themselves. The review of the PCEHR released in May 2014 establishes a firm foundation for the My Health Record to become the central repository of patient information, for both general health and chronic disease management.
4.7                   NeHTA will transition into the Australian Digital Health Agency as of 1 July 2016, continuing its work in the electronic health standards space, as well as taking responsibility for the continued management of the My Health Record.
4.8                   Access to the My Health Record is currently limited to the patient and any ‘nominated healthcare provider’ that is granted access by the patient’s consent; however access to the health information stored within can be accessed by certain parties in the case of an emergency.
4.9                   The patient data stored within the My Health Record, as well as in the wider electronic patient and other health record systems across Australia, can form the datasets and data registries that many identify as being crucial to coordinated chronic disease care, as well as evidence-based research and policy development.
Datasets and Registries
4.10                The creation of a unified national health dataset, by combining the information from federal government data (Medicare, Pharmaceutical Benefits Scheme (PBS) and aged care) along with private and public hospital data, is an ideal outcome that could help drive health outcomes and reform.
4.11                However, the reality of multiple sources, formats, quality and access to the health care data existing in Australia’s systems places barriers on accessing a centrally consistent dataset or data registry for use in chronic disease prevention or management.
Currently there are multiple datasets of patient information within the health care sector, as well as potentially replicated data held by private health insurers related to their members. The potential to access that de- identified or secure member data, to supplement any consolidated government patient data, is a compelling reason to investigate sharing and
Recommendation 10
The Committee recommends that the Australian Government examine the feasibility of linking relevant Medicare Benefits Schedule, Pharmaceutical Benefits Scheme and Repatriation Pharmaceutical Benefits Scheme data, with applicable hospital patient data, to create a unified patient dataset, or to consider this link when developing the National Minimum Data Set for Healthier Medicare purposes.
Moving into the Future
5.112  Supported by well-funded and coordinated eHealth systems – expansion of the My Health Record to become the central repository of patient data, augmented by practice data and de-identified central government treatment data, that can be used for performance measurement, as well as research and outcomes-based improvement.
5.117  Additionally, the Committee recommends that the Australian Government continue to fund the evolution and expansion of the My Health Record, managed by the Australian Digital Health Agency from 1 July 2016. The importance of patient-managed care information, as well as the resultant data that can be used to measure successes, failures and outcomes, as identified in Chapter 4, is essential to moving the primary health care system into the future.
Recommendation 13
5.120    The Committee recommends that the Australian Government continue to prioritise funding of the evolution and expansion of the My Health Record to support improvements in the prevention and management of chronic disease, as well as the wellness of all Australians.
----- End Extracts
Overall what we see here is:
1. There seems to be a total failure to recognise the myHR is a secondary system and not a primary data source. The GP, Specialist and Diagnostic systems are where the trustworthy information is.
2. The myHR is not well designed to support co-ordinated care as opposed to other much better designed private sector systems to support these requirements.
3. The politicians seem to want to create huge databases of personal health information that they can just troll at whim - while the really don’t understand just how reliable and trustworthy the base information is and how wrong conclusions may be derived. Of course all this ignores the security and privacy implications…
4. Yet again we have just a bucket load of assertions as to benefit on the scantiest, if indeed, any evidence.
The bottom line is that the pollies are victims of the magical thinking of the bureaucrats who think they can produce a wonderful data and information driven future without having a clue just how hard it will be.
David.

4 comments:

Bernard Robertson-Dunn said...

David,

I agree with your assessment:

"1. There seems to be a total failure to recognise the myHR is a secondary system and not a primary data source. The GP, Specialist and Diagnostic systems are where the trustworthy information is."

2. The myHR is not well designed to support co-ordinated care as opposed to other much better designed private sector systems to support these requirements."

Even the government says it is not intended to replace primary systems. It has not been designed to aid clinical decision making - the data is not organised so a clinician can look at the data from the perspective of a medical problem - it's just a data dump.

"3. The politicians seem to want to create huge databases of personal health information that they can just troll at whim - while they really don’t understand just how reliable and trustworthy the base information is and how wrong conclusions may be derived. Of course all this ignores the security and privacy implications"

It's likely to be the bureaucrats as well as the politicians. Neither understand what's been implemented or the true consequences, both intended and unintended.

"4. Yet again we have just a bucket load of assertions as to benefit on the scantiest, if indeed, any evidence."

I have looked very hard to find any reliable evidence that applying IT to health will result in reduced costs. All the studies I have found say that the use of IT in manufacturing, finance, transport, etc has reduced costs and should therefore have the same outcome when applied to health care.

The invalid and fatal assumption is that health care can be automated just like a production line. And I use the word fatal deliberately.

All the evidence suggests that applying IT to health care will increase costs. Better outcomes/effectiveness? yes. Increased efficiency? No.

"The bottom line is that the pollies are victims of the magical thinking of the bureaucrats who think they can produce a wonderful data and information driven future without having a clue just how hard it will be."

It's called the silver bullet syndrome and is usually included in government business cases as the last step: "and then a miracle happens".

It's also called the Dunning Kruger effect: http://drbrd.com/docs/DunningKruger.pdf

Peter said...

As an IT professional I am amazed at how little the health industry seems willing to learn and adopt from other sectors. Massive centralised stores are counter to the general trend in IT and the networked nature of the internet. The exception is the specific case of business intelligence - in health that would equate to population statistics and epidemiology - and that is normally done using anonymised data.
To my mind the myHR would best operate as an MDM (master Data management) system. That is - it holds little information itself, perhaps just a summary, but mostly consists of links and connections to the primary sources. Hence it provides an access point for the data, not a storage location. Anyone needing a patient's history calls the central broker which reaches out to all the disparate sources to create a consolidated/aggregated view.
[On a separate, trivial, note, the name "My Health Record" always reminds me of the folder names in Windows95 - i.e something 20 years out of date]

Bernard Robertson-Dunn said...

re: "To my mind the myHR would best operate as an MDM (master Data management) system. That is - it holds little information itself, perhaps just a summary, but mostly consists of links and connections to the primary sources. Hence it provides an access point for the data, not a storage location. Anyone needing a patient's history calls the central broker which reaches out to all the disparate sources to create a consolidated/aggregated view."

That's the direction a number of people have been proposing for a while, me included. However, it also needs a few more things:

1. No patient control over the contents

2. No direct patient access - they should be able to go through their GP, who can provide them with whatever data is appropriate for their needs and level of understanding

3. Access is on a need-to-know basis - e.g. a chiropodist or dentist can't see a patient's mental health details. Implementing a need-to-know principle means that the data in the system has to be properly managed and curated.

And IMHO it's not the health industry, it's that part of government responsible for funding the health industry. They understand neither health care nor information management.

Andrew McIntyre said...

In fact, before the started spending $2 Billion medicare would have the best data around about what healthcare providers had seen the patient via billing data.

Being able to get this list would enable a provider to request relevant data from all other providers involved and this could be dealt with on a peer to peer basis with only appropriate data being sent depending on who created the request.

Having the ability to exchange standards compliant data between themselves is the base level of functionality that allows many more exciting "applications" to be built on top of it but sadly we have not addressed the base level of functionality and the money has been largely wasted.

The focus on high quality standards compliant atomic data freely moving between health care providers in a secure authenticated manner is what we needed all along, but despite pursuing this with missionary zeal no one has been listening and they are unlikely to listen from high up in their castle in the air. The sooner this fails the sooner we can get back on track!