Wednesday, November 13, 2013

Very Draft PCEHR Enquiry Submission November 2013 Version 0.1

Note this is a condensed summary document. I do not believe anything contained here is not supported by detailed evidence which can be found on my blog.

Background To The PCEHR Program.

The idea for the Personally Controlled Electronic Health Record emerged from the NHHRC, as an afterthought, and appeared, without any significant consultation, in the May 2010 Budget as a $467M 2 year project that was to go live on July 1, 2012. Further funding was to be contingent on the system delivering benefits - but nevertheless more funding as provided to the present day.

There was no cost / benefit studies undertaken on the plans and it was assumed the benefits case for a quite different NEHTA IEHR proposal was assumed to be correct - despite the fact that many of the drivers of the benefits were not present in the PCEHR (e.g. Clinical Decision Support). A public consultation on the original PCEHR Proposal resulted in virtually no change to the plans despite a lot of sensible concerns being expressed.

The PCEHR went live, with some issues that appeared to be related to absurdly tight delivery guidelines applied by the then Minister, in July 2012 and since then it has been gradually enhanced and considerable work has been done to integrate access to the PCEHR from the major General Practice Management Systems. This explains why some 16 months later the system is still not delivered and fully functional. Politics has also led to ‘function creep’ with announcements of additional functionality before the system was stabilised.

Nowhere in Western World has a major Health IT project of this scale, with the planned mode of operation been either delivered successfully in such a time-frame or shown to offer benefit. The design has been based on intuition rather than evidence and on the basis of clinician and patient reaction this seems not to have been correct. (The evidence for this lies in the fact that despite over 1 million people having registered for a record only 30,000 or so have actually added some of their information to the record - so the public is not using it).

Ignoring all the usability, medico-legal, workflow, workload, data quality, data ownership, data control and clinical relevance issues to me there are two major problems. The first is that the PCEHR can’t be a system to properly and fully serves the needs of professional clinicians and patients simultaneously. They have dramatically different needs and just who the PCEHR is for and what it is actually meant to do for them is crucial. If it is for patients the system lack and really can’t deliver the functions international experience shows are valued (appointment making, repeat prescriptions, direct e-mail to their GP and access to approved laboratory results (not yet available but maybe possible). If it is for clinicians it is too slow, lacks decision support, external communications and the list goes on.

The second issue is, bluntly, that the concept of patient control just alienates clinicians as a place to source information that can be trusted.

Throughout the conceptual development, actual development and roll out the drivers of progress have been NEHTA and the then DoHA who have both been actively hostile to many private sector initiatives and who have actively corrupted and distorted the e-Health Standards setting processes.

Over the last two to three years the leadership and governance of the PCEHR Program and other initiatives has been secretive, non-transparent arrogant and un-consultative.

The outcome of all this is that we have a system which was not recommended by the 2008 National E-Health Strategy, which does not serve anyone’s needs well, which is said to have now cost near to a billion dollars, which is strongly suspected to be intended to be an administrative and not clinically focussed system which have so far delivered virtually no benefits to patients or their doctors.

What Is To Be / Should Be Done From Here?

To put is simply, for me, what is needed is that the policy makers decide (in consultation with relevant stakeholders) what it is they want in a national system and just who that system is to be deigned to serve.

It goes without saying that what follows assumes dramatically improved leadership, governance and transparency than has been evidenced to date by NEHTA and DoHA in the e-Health domain.

If asked, my preferred approach to e-Health going forward, would have two broad components.

The first would be based on enhanced connectivity and functionality for current practice management systems used by GPs, Specialists, Allied Health and Hospitals. The objective would be to maximise and optimise the information flows between all actors in the health system and thereby improve the patient experience as well as the quality and safety of care. Much of this could be achieved working with the private sector.

Part of the enhancements would be to design (as is happening in the UK and the US) ways that patients could interact electronically with their clinicians to see the benefits cited above.

The second would be to develop regional shared record hubs which would hold a carefully considered subset of health information to assist Hospitals and other clinicians offer care (with the patient’s consent) based on information held on the shared records in emergent and travel situations. These hubs I envisage as being developed, trialled and refined over time with an active network to learn what was working, what was not and how the good ideas that are working can be spread.

As far as current activities are concerned I would see the continuation of the core e-Health infrastructure (SMD, IHI Service, Terminology Support etc.) and continue support of the PCEHR until such time as regional shared record hubs can be put in place.

I would also fundamentally restructure NEHTA and the e-Heath parts of DoH to improve transparency, stakeholder engagement etc. I believe all this is consistent to the 2008 E-Health Strategy and likely to be consistent with the planned 2013 refresh.

There is a lot of detail that can be filled in to flesh out these ideas but overall it seems to me an approach of this type can achieve the dual objectives of quality professional / clinician support and communication with patient interaction to the extent they desire can be mediated.

What would others do?

Critical Link:



Anonymous said...

There is an issue currently with trust of the PCEHR. Trust by consumers and trust by providers.

Reasons: it was rushed, not properly tested, there were some problems with the initial implementation. It was empty for a long time, except for meaningless claims data, which was already available online. Specifications were published and then withdrawn with errors. I can’t understand how the access and privacy works, and am unsure of who can see what and when, and to what level of granularity I can control that. Measuring the performance of the system is for political targets, not healthcare related (e.g. number of people persuaded to register, implementing a fault system by a certain date). Clinical champions have walked away.
As a consumer, I don’t trust that my record will be complete or correct. I doubt is my healthcare providers trust it more than I do.

So my question is, what can be done now to enable people to trust the system and actually use it?

Marcus said...

What would I do?

I would come "Over the Top" with a wisdom network to organise telewisdom in the "Internet of Everything" between people through their mobile devices.

#1 OPEN: Pass a law stating that health data is owned by the patient
#2 AVAILABLE Give all the health "things" a URL (leaving them where they are) irrespective of where the things are stored (PCEHR, Practice Managament Systems, cloud based storage)
#3 REVEAL KNOWLEDGE Aggregate, link and bring functionality to every health "thing" in a distributed network which focuses the wisdom of crowds.
#4 RESPONSIBILITY FOR ACTION Assign responsibility for linking things together to create a "PatientBook" (o PCEHR) to the indiviudal (which they could assign to a family member or another individual).
#4 COLLABORATION TOOLS TO FOCUS THINGS ON ACTION AND OUTCOMES The functionality required by each participant can then be applied to each "thing". The functionality could be integrated within days from open source (which could take days), rather than build and integrate proprietary software. This includes appointment setting, discussions, polls, tasks, project plans. It is just a case of cutting and pasting this functionality from open source software communities.
#5 COMMUNITY REWARD FOR ACTION AND TRANSPARENCY Introduce Gamification: the community earns points for linking things, quality, contribution and loses points if there is untimely delivery.
#6: AVAILABLE (REAL_TIME AND MOBILE) Design it as a real-time telewisdom system which exchanges wisdom between people on their mobile devices (information access, collaboration (ie appointment setting, discussions, information exchange, single place for knowledge) all occurred in real-time.
#7: USAGE BASED UPON THE DESIRES OF EACH PARTICIPANT Tthe patients, doctors and nurses decided the degree they want (or need) to use it. Information storage, the degree of collaboration are choices made by the specific care community.

This would empower the doctors, patients, nurses and other caregivers with the knowledge of every "thing" and the functionality to focus the wisdom of crowds on an individuals health care.

The reality is that global startups are created very fast (sometimes in 3 day hack weekends). I accept the system is complex. However, the only objective of the system should be to make the right things available to the right people at the right time. This is a simple decentralised system delivered through mobile devices. It would, however, require a structure that leverages the "Internet of Everything". This approach could deliver an platform within delivered in 90 days with 3 guys and a coffee machine (excluding industry consultation). Each patient could then decide how they want to use and demand access to their patient information for inclusion in their health record.

Additional information (presentations, videos) at .

Bernard Robertson-Dunn said...

For every complex problem there is always at least one simple, obvious solution that is wrong.

"Pass a law stating that health data is owned by the patient"

What is health data? What is owned?

When a doctor makes notes to himself re an on-going patient, is that health data?

When you claim against a health insurance policy, is that health data?

In an operating theatre, if one surgeon makes a suggestion to another surgeon regarding a particular procedure, and that suggestion is ignored in favour of another, is that incident health data?

If a citizen answers a health related question at a national census, is that health data?

etc etc.

Health is a very complex environment. Solutions that apply to other areas, almost certainly are inappropriate for health.

As I and others have pointed out, poor solutions will destroy the trust that is necessary for good health systems.

Dr David More MB PhD FACHI said...

Can I just let people know the trust issue has been also mentioned by a number 0f e-mail responses - so I plan to work it in - forcefully.


Marcus said...

Hi Bernard

I have only every heard of Occhim razor. “The application of the principle often shifts the burden of proof in a discussion.[a] The razor states that one should proceed to simpler theories until simplicity can be traded for greater explanatory power.

The simplest solution in my mind is to go “Over the Top” with a distributed person to person solution that assembles “things” in the Internet of Everything.
I don’t understand why anyone would do anything else.

The burden of proof must lie with someone to justify centralising information at exponential endless expense, other than a solution that serves the people. Who does Australia's PCEHR serve?

I disagree with your statement that health is complex. Personal health is very simple. The health industry is very complex. After decades of every hierarchy pursuing annuity revenue and control of the channel to secure competitive advantage, we have cascading levels of complexity which fails to solve the person to person interaction.

Your data ownership question ...
My reference to data ownership is a reference to a well recognised global shift. It is a global movement that, in essence, empowers the individual and enables the “Internet of Everything”. I have extracted the following from Slide 40 of the Health Wisdom presentation (and the sources are provided in that document)

"Personal information becomes legally recognized as yours While there is a push by the White House and others to implement a consumer privacy Bill of Rights that increases consumer privacy, a larger shift is already under way that will radically shift the security and privacy debate. In the future, you may own the data that exists about you or that you create online, rather than it being owned by the companies that collect it (like, Facebook, Google, and Twitter)."

"When you have legal rights over your information, you have more control over how it is collected and used. This view that data about you is property, and that you own it, is gaining momentum, such as in the United Kingdom, the World Economic Forum, and the European Union’s recognition of personal data protection as a fundamental human right."

You also ask when a piece of data becomes a "thing" in the "Internet of Everything". The short answer is when the individual that created it or found it spends 60 seconds to publish it to the Internet of Everything and link it to wherever or whoever it is required.

“Poor solutions will destroy trust”
Trust in government is at an all time low. Trust in achieving outcomes in large scale IT projects is also low. 5 people in 6 months could have delivered an eHealth platform specifically targeting at delivering eHealth for people by restructuring human time and attention .

Marcus said...

You have prompted me to think about the different underlying assumptions between a $600m ehealth project (and $100m’s of ongoing cost) and a $600k one off project. I’ll write a blog article on it in the next few weeks, but in the interim I'll offer a few quick thoughts

The differences include:
erroneous assumption of complexity. Personal interaction between health care participants is simple. The health industry is complex. The cascading levels of complexity that have developed over decades is complex, unsustainable and has failed to serve society. There are many countries where the society and system is on the verge of collapse due to the waste and inability to service current and future demand.

economy vs society: a society would focus on solving the problem betwreach peeen doctors, patients, nurses and other caregivers. An economy is concerned with wealth transfers, revenue, owning the channel, owning the customer and developing annuity revenue to sustain hierarchy.

distributed structure vs centralisation. We are at the end of the Information Age. It was based on person to person telecommunications that needed corporate channel and hierarchies to reach people. We can now structure peer to peer. That has a profound impact. Hierarchies and channels are now superseded by the peer to peer nature of the internet. However, these IT projects assume centralisation.

empower people or something else: Who does the PCEHR serve? The focus needs to be focussing restructuring personal time and attention amongst doctors, nurses, patients and caregivers (rather than information distribution amongst hierarchies).

information vs wisdom: We have information everwhere, but no wisdom (knowledge and abilty to focus action on outcomes). An Electronic Health record may achieve 100% centralisation of information. However, if no-one uses it, then no value to society is derived. If they use it, but can’t take action on it in real time amongst caregivers, then there is no value to society. May I ask what is the 100% to which you refer? What is the PCEHR trying to achieve 100% of?

The onus of proof should be on those that want to do something other than a one off $600k, 6 month, 6 person project, open source project to deliver immediate wisdom in the personal interaction between doctors, patients, nurses and other caregivers. Industry participants can then contribute to the available “things”.

The complexity to which you refer needs to be simplified because the spend will (and is) bankrupting societies all around the world and is not sustainable. Precious resources are wasted on overhead. It is my personal view that everything will ultimately simply organise “things” in the internet of everything …

What is the complexity to which you refer? What is the 100% to which you refer? How can spending $1bn (and annuity payments indefinitely) be justified with a series of assumptions that are somewhere between 5 and 30 years old? I not only think health is simple. I think one platform can also service education and equity market participants. It is just about restructuring human time and attention to make the right things available, at the right place in real time. How does a centralised structure add value to the the real-time personal interaction between doctors, patients and nurses.

Greater explanatory power is required to justify anything other than a $600k one off project. I also note that this US Peace Corp is now deploying OpenEMR globally. I don’t understand why a government would choose to build their own over years, rather than just assemble in months from proven open source software.

Even if the complexity to which you refer was justified. Society can not afford it. Only simpler structures are sustainable.

Unfortunately, history shows us that systems need to collapse or have crisis before fundamental change occurs. Australia only has a debt level at 20% of GDP. We can spend a bit more on this centralised approach, but ultimately a crisis or collapse will provide a distributed structure that empowers people.