Tuesday, November 12, 2013

PCEHR Enquiry - Opportunity To Provide Input. Please Help!

I have just been asked by the Enquiry to produce a 2 page summary of the issues and recommendations that I feel need to be fully reviewed and considered by the three man team who are developing the report for Minister Dutton.

I would really like input from all readers as to what readers see as important, so I can be sure I am on the money.

My early list is that we need to make sure major changes are made to the leadership and governance of the whole e-Health effort, that real involvement and consultation happens with clinicians, consumers and the industry and that we need to be very clear just what the PCEHR is actually meant to be and do and use that to decide how it should be reshaped.

Basic brief is what is wrong, how can it be fixed and  how can we get there?

I think most readers know my views but I really want to put something to the Review that reflects the expert audience we have here. If you don't want me to wander off with my own preferences now is the time to provide a comment or e-mail (davidgm@optusnet.com.au).

Many thanks and I will try to reflect the views I receive.



Anonymous said...

I find it interesting that while we say there was no/ineffectual engagement with clinicians - what were the clinical leads doing? Many of these individuals were involved for years? Why did they jump when they did? Surely they should have jumped earlier - the indicators of problems was not something that happened late in the piece. I also find it interesting that many of these individuals pop up in other eHealth advisory groups, leadership roles etc. Was the NEHTA/DOHA ignoring them or are they not they great at representing clinical groups all that well?

Dr David More MB PhD FACHI said...

Think $$$


Bernard Robertson-Dunn said...


I'm glad to hear that the enquiry is at least prepared to listen to views from the outside.

I've been looking at the whole eHealth initiative as something that should have the goal of improving health outcomes. I'm not a health professional, however I have had significant experience in a wide variety of system developments and have seen many successful and too many unsuccessful projects.

The similarities between this project and the Human Services Access Card is frightening. The major difference being that the PCEHR was actually implemented and its success or failure will be very easy to measure.

My summary, written to cover what I think are the important points, not for readability.

First the issues:

An eHealth record is more than just IT, however the PCEHR has been implemented as an IT system to automate much of what is already in place. Little or no consideration has been given to how a Health record could change the way health is delivered. The opportunities to improve health processes has been missed. The PCEHR will most likely make future improvements in the delivery of healthcare more difficult because the PCEHR will need to be changed as well.

The measures of the PCEHR are project/IT related have nothing to do with health outcomes. If the PCEHR does not improve health outcomes or does not deliver the same health outcomes at reduced cost then what is it's justification? There is no (published) justification of the PCEHR based upon health outcomes.

Not enough analysis has been undertaken regarding the data held in the PCEHR, specifically, its accuracy and the control over who can access it.. The access controls in the current system are primitive and are open to abuse. The dichotomy between patient privacy and the needs of health care professionals has not been properly addressed.

In addition, there are no clear processes or procedures for correcting inaccurate data or resolving issues and disputes between patients and health care professionals.

The legal responsibilities of the participants has not been addressed. Who is responsible if inaccurate data is used by a health care professional and the patient is injured or harmed?

The relationship between local and state based record systems is not clear. It has been stated that the data in the PCEHR should not be treated as up to date or complete. Most health professionals will use local systems as a matter of course and because more of their patients will have their data in those systems. What extra benefit is the PCEHR over local systems?

Bernard Robertson-Dunn said...

Second, recommendations.

This is not as easy as identifying the issues, because it is not clear from outside what the constraints and drivers are. There is a lot of politics and ego involved in eHealth and this project in particular.

The major lesson to be learned from this whole experience is that the public service learns very slowly, not at the individual level only at the organisational level. Public Servants rarely change, change only comes when new people replace the old.

Some recommendations - I may come up with some more in the next day or so.

Any health record system must be based upon trust. The PCEHR is in danger of losing trust such that a better approach may not gain broad acceptance for many years.

I recommend that the PCEHR be taken off line immediately in order not to risk losing more trust. So far no negative outcomes have occurred. IMHO, there is a high likelihood that some will. If they do it will set eHealth back significantly.

Secondly, the big bang approach has been a failure on many large projects, this is yet another one. As has been pointed out many times and by no less a person than the Public Service Commissioner Lynelle Briggs, health is a wicked problem.

I recommend that whoever is charged with sorting this mess out at least reads "Tackling wicked problems : A public policy perspective" available here http://www.apsc.gov.au/__data/assets/pdf_file/0005/6386/wickedproblems.pdf

I recommend a better approach with less risk and more opportunities to get it right. Start small and grow over time, using experiences gained from experiments and trial and error.

Whatever approach is decided on should focus on health processes and information, not technology

The approach should have health outcomes as the clearly specified goals and should detail how those outcomes are to be achieved.

The biggest question is "who should take this forward?". It's almost worth recommending that no one involved up to now should have anything to do with it in the future, but that's a bit much to expect when you're dealing with the federal government.

Notwithstanding that this is unlikely to happen, the second best thing is to make the project highly open and transparent. There are plenty of people who have far more experience developing and delivering such systems than could be employed by either NEHTA and/or Health.

Why don't they try something really original and make public all project deliverables up to and including any RFT materials? That way they can elicit feedback from a wide range of, often very expensive, skilled resources. If it becomes unworkable, then that will be a sign that the problem is too difficult to resolve and the whole process can be reviewed and/or stopped.

In my experience, there are two major areas where things go wrong. Decisions are made in the wrong order and things are left out. Those who know what they are doing and have done it before can spot these things in minutes. Those who have never done it before won't know and may never know. Getting outside help, if handled correctly, could result in a much better process.

And a final declaration of interest. I have no relationship with any government department, any vendor, any consultancy, any health organisation or any other commercial interest in the health industry. However, I am an Australian citizen, I'd like to see problems solved properly and I know we can do better than we've done so far.

Marcus said...

2 pages? I'll try to be brief.

The PCEHR centralises information. It shifts information from wherever it is to a different place. The Centralisation costs people time to maintain a distant repository, but offers no value proposition to doctors, patients and other care givers. The world is evolving toward distributed structures which empower individuals with wisdom at the point of interaction.

The information is already available to people at the point health care services are delivered (ie; when they are physically together). In most cases, the patient have the history or can ask for it. The issue is that when you make something virtually available the value proposition has to be expanded. Wisdom needs be achieved in virtual (formerly physical) interactions. The system puts data and information in the cloud. The other 4 elements of wisdom need to be added (community, collaboration, knowledge and wisdom).

Information is everywhere (ie Internet of Everything). Every device, person and process can be connected. Just give it a web address and bring wisdom to it. There is no need to shift it around. Just leave it where it is, in the hands of the people that created it. Come over the top and aggreegate it. Creating silos of information is expensive and ultimately redundant.

The centralised PCEHR has integrated many complex systems from proprietary vendors at great expense. A model based around a distributed structure means that open source software is more suited. It was engineered to be distributed and open. This means that free software can be assmebled, quickly and cheaply without expensive integration, development and licensing.

Health Wisdom is an "Over the Top" platform that organises telewisdom between patients, doctors, nurses and other caregivers in the Internet of Everything. There are videos, presentations at http://www.wisdomnetworks.im/networks/health . It includes 20 minutes of video and a 5 minute "Health Wisdom demonstrated" video.

In my very limited interactions with NEHTA, I was told that their mandate was not to do collaboration amongst doctors, patients and nurses. They were just going to centralise information. It is only collaboration and specifically wisdom brought together at the point of care that delivers significant value and improvement in health care outcomes. The PCEHR has assembled the health "things" (albeit centralised). It is time to come Over the Top and provide doctors, patients, nurses and other care givers with the ability to exchange real-time wisdom over the internet and mobile devices. The cost and timeframe to come over the top is trival.

Bernard Robertson-Dunn said...

While I agree with your assessment of many of the issues, especially the centralised vs decentralised issue, I'm not convinced that your proposed solution of "health wisdom networks" is appropriate.

IMHO, you are falling into exactly the same trap as NEHTA - you know the solution, but you don't understand the problem, especially the issue of data accuracy.

You make use of the Pareto principle - the 80/20 rule. This doesn't always work. Think of an airplane that lands successfully 80% of the time, or a ship that sinks 20% of the time. Or a patient's health information that is correct 80% of the time, or a patient's health information is freely available to any interested observer 20% of the time.

Sometimes it's all or nothing. Health systems and health information needs to be correct as close to 100% of the time as possible.

And I don't like the the way you have redefined "wisdom". IMHO, wisdom is a characteristic of a human being. A human can be wise, a machine, network or system cannot.

Terry Hannan said...

Bernard, (you website will not accept my Registration), David and I share fairly common perspectives on this topic of the PCEHR and more importantly e-health (we do not always agree). As you are entering from the non-clinical portal you may be interested in a "clinical informaticians" perspectives on these topics.
1. A recent publication by myself.Hannan TJ, Celia C. Are doctors the structural weakness in the e-health building? Intern Med J. 2013;43(10):1155-64. Epub 2013/10/19.
2. My personal commentaries (David has permitted posting this link before) via my pseudonym the Informatics Insider newsletters at www.austemrs.com.au On this site I comment on e-health in Australia and overseas where I have had extensive experience. Terry hannan

Anonymous said...

Do we know who the organisations are that have been granted permission to contribute a submission?

Dr David More MB PhD FACHI said...

Everyone who has done submissions in the past on the PCEHR.


Anonymous said...

David, leaving the clinical content to the experts the following are some general comments about the PCEHR architecture. Some points have also been made in earlier posts -

It is obvious based on the design that there was no records management experience in the design of the core system

Authentication is weak and secure messaging or PKI is not the answer in who is accessing data. It should be using some type of 2FA and person is present.

Privacy concerns in relation to the unvetted access by NEHTA/DoHA or provider staff.

Legal obligations in respect to a data breach.

Data ownership, who owns what and who has control

Anonymous said...

David, on 11/13/2013 04:08:00 you said that .... Everyone who has done submissions in the past on the PCEHR are able to make submissions.

119 submissions were received and published in response to the PCEHR Draft Concept of Operations – Relating to the introduction of a PCEHR system.

Are all these parties eligible to participate in the current review?

Where should submissions be sent to?

Dr David More MB PhD FACHI said...

If you believe you are eligible - and I am not sure why Public Subs were not OK - just contact the number on the Ministerial press release at the Health Department Web Site.

Media contact: Kay McNiece, Minister Dutton’s Office, 0412 132 58

I am sure Ms McNiece can advise.

Here is the Departmental Number given on their release:

Media contact: 02 6289 7400