Canberra Health System Second First Hand Experience

A few weeks ago I put something in a bin, turned, took a step and my head hit something very hard. I screamed in pain, had a sensation of falling backwards, then the next thing I knew I was lying on my back looking up at someone. They asked "Are you okay?". It was a question I did not know the answer to. I took a few seconds to check I was not bleeding, & my limbs were working. I then slowly got up and introduced myself. I did this to check I still knew my name, which I did. I was remarkably uninjured apart from a bruise on my head & a slight headache. I then saw I had walked into the underside of an overhead concrete set of stairs. I suspect I was a victim of the forced perspective illusion: I had seen the sloping underside of the stairs as a flat ceiling overhead, receding into the distance.

Feeling not too bad I went to lunch, negotiated a parking space and new five year contract. However, several hours later I started to feel unwell. I found I had difficulty turning my head to the side & felt slightly dizzy. This got worse and as it was late at night I went to the Inner North (Dickson) Walk-in Centre. The wait was not too long, but I found myself getting worse. Show into a consulting room I explained what had happened. It was a little difficult to explain I had hit my head on a concrete stairwell, then fallen over. Asked if I was unconscious I couldn't say (eventually I worked out I must have been for ten seconds).

Things got interesting when the nurse took my blood pressure. They looked worried, then went out and got a much bigger machine, took another reading and looked even more worried. At this point ey suggested I needed to go to hospital & with my concurrence called an ambulance (at this point I was in a slightly dissociated state & would have agreed to anything). I was surprised they picked up a phone, dialled Triple-0 and relayed my details by voice. I had assumed they would click a red button on their screen & have my details (which were already entered in the ACT Health computer) sent electronically to the ACT Ambulance Service. Later the ambulance staff relayed my details by radio to the hospital, despite, again, this being part of the same health system. 

After a few minutes ,two ambulance personnel turned up and put me on a trolley. Unfortunately there is no curb cut directly outside the the Inner North (Dickson) Walk-in Centre and nowhere to park an ambulance. These are odd omissions for a medical facility. As a result I had to be wheeled along the footpath away from the ambulance, then after a 360 degree turn on the road, back to the ambulance. This was with traffic passing on the road. Some of the paperwork started blowing away and I could see the person pushing my trolley weighing up if they could level me long enough to secure it. We were on a downward slope towards a ramp into an underground carpark, so I had visions of careering down the street like a scene from Mr Bean. Fortunately the officer decided to keep hold of me and collect the paperwork later. 

The ride to North Canberra Hospital was surprisingly uncomfortable. This was my second ride in an ambulance (I don't remember much of the first one). I could feel every bump and the corners felt like the ambulance was spinning around (no doubt due to my condition). We arrived at hospital and I was quickly wheeled in and transferred to a bed. 

A succession of people asked me what medication I was taking. Unfortunately in my confused state I could not remember. I vaguely knew it was in an app on my phone but I couldn't remember which app (there are three different government systems I have records in). I have extreme difficulty trying to access MyGov, as it requires multi-factor authentication. It turns out the records I needed were in My Health Record, which only needed a thumb scan, but I lacked the presence of mind at the time. What is surprising is that staff at a government hospital don't have access to digital medical records held on government systems, in an emergency.

I was hooked up to beeping machines and had blood taken. Some time later I had a CAT scan. Every hour or so I was asked what were the three things I was asked to remember (I can still remember them). For the first few hours I was in the emergency ward and noticed that no one ever walked slowly. Everyone was walking very briskly, except for those pushing COWs (Computers of Wheels), where they were typing on screen, while pushing the equipment from patient to patient. 

My CAT scan came back okay & I was moved to a quieter ward. Unfortunately the gadgets attached to the patients still kept beeping all night. Around dawn I was asked to remember the three things for the final time and discharged. I walked down the hill from the hospital and, with a feeling of weary elation, got on a bus to go home.

Despite the above quibbles, I would like to thank the staff of the Inner North (Dickson) Walk-in Centre, ACT Ambulance Service and North Canberra Hospital for the excellent care I received. 

Broken Disap SR Capsules

A pharmacy in Canberra dispensed Diasp SR (from Aspen Pharma Pty Ltd, Batch number 5150346, 200mg/25mg dipyridamole and aspirin) to me in place of Asasantin. Two of the 60 capsules were broken, spilling their contents into the bottle. Apart from wasting about a dollars worth of medicine, the spilled contents, which had the consistency of sand, stuck to the other capsules giving them a very bitter taste. I showed a broken capsule to the pharmacy and today advised the supplier of the issue directly, in case there is a manufacturing problem. It is possible to tell if the capsules are broken by shaking the bottle and listening for a sound like sand moving around, rather than the rattle of capsules.

Health and climate change report

Apparently a group called the "2015 Lancet Commission on Health and Climate Change" have released a report. I am sitting in a presentation by the authors (Neil Adger, Nick Watts and Anthony Costello). They say the report is available free from the Lancet website, but I am having difficulty finding the actual report, which may be titled "Health and climate change: policy responses to protect public health" (23 June 2015
http://dx.doi.org/10.1016/
S0140-6736(15)60854-6). A Google Scholar search did not find it.

"The 2015 Lancet Commission on Health and Climate Change maps out the impacts of climate change, and the necessary policy responses, to ensure the highest attainable standards of health for populations worldwide. This Commission is multidisciplinary and international, with strong collaboration between academic centres in Europe and China. The central finding from the Commission is that tackling climate change could be the greatest global health opportunity of the 21st century."

 The quality of the sound on the video link from the UK is also low so I can't quite hear what the speakers are saying. It is unfortunate that the authors put so much effort into writing a report but did not expend the required effort on distributing the results.

As far as I can tell the content of the  report is the same sort of well meaning but counter-productive material which as been produced by climate scientists, but from a health perspective. The problem is when scientists and specialists try to explain climate change to the general public. By providing simplified explanations they open themselves up to attacks from those with a vested interest in delaying action on climate change and still can't make it simple enough for the general public to understand. At best the public and decision makers will be confused, at worst they will think the scientists are trying to trick them.

Play About a Greek Nursing Home: Bittersweet Comedy

Last night I had an unexpected invitation to "The Plot", a play by Evdokia Katahanas and directed by Sophie Kelly at the Mantouridion Theatre, Marrickville, Sydney. The play chronicles a few days at an aged care centre, run for the Greek community. It is about the politics of staff versus a governing board, political ambition, personal relationships in the workplace and testing the bonds of friendship.

The Play starts with the main character as a little girl singing "You'll Never Walk Alone"reminiscent of the start of "Jerusalem" at New Theater Sydney (2013), which was also about an idealistic individual battling an uncaring organization. The Plot is not as frantic as Jerusalem, with more warmth.

Most of the play is set in a nursing home, with a hospital bed dominating the otherwise mostly bare stage. The play starts well, but ends abruptly, perhaps like a Greek tragedy, where the message is that mortals come and go but the goods of fate go on.

The Mantouridion Theatre is also know as "The Greek Theatre" and usually puts on ancient Greek classics in Greek. But "The Plot" is a new work in English (altough the themes are ageless).  The Theatre is located in the Addison Road Community Centre (Marrickville, Sydney) and is worth a visit on its own. This former Army Barracks  is now home to the Sidetrack Theatre, several child care centres, art galleries and recycling centres.

The Plot, runs until 1 March 2015 at the Mantouridion Theatre, Sydney. I could not find a website for the theatre, but you can book tickets online at TryBooking.com

Building a Remote Collaborative Learning Course

Greetings from the 8th International Conference on Computer Science and Education (ICCSE 2013) in Colombo, Sri Lanka, where Hampton C. Gabler is speaking on  "Building a Remote Collaborative Learning Course in Computational Modeling of Car Crash Injury Prevention". He is looking at how to better teach students across two campuses. He commented students did not like forming teams across campuses (which is also the ANU experience). But it seemed to me that the teaching approach was still too much tied to a traditional lecture based mode, but with video. I suggested the video time could be better used for students talking to each other. Earlier in the day I discussed how we could flip the teaching approach to use asynchronous e-learning with very limited synchronous.

This paper describes an approach for the design of coursework in crash injury biomechanics based on a remote collaborative learning environment. Virginia Tech and Wake Forest University (VT-WFU) have formed the Center for Injury Biomechanics, a unique partnership, which offers a graduate curriculum in crash injury biomechanics to prepare graduate biomechanics students to address this critical public health issue. A challenge however has been how to integrate students at these two geographically separated organizations. This paper describes our experiences in designing and conduct a highly interactive class which revolved around open-ended design and analysis problems. The result has been a course conducted in the collaborative problem-solving environment characteristic of modern interdisciplinary research organizations distributed across geographically disparate regions. From: Building a Remote Collaborative Learning Course in Computational Modeling of Car Crash Injury Prevention, Hampton C. Gabler, Virginia Polytechnic Inst. & State Univ., ICCSE 2013, pp. 751-754.

Unable to Register for a e-Health Record

A letter from the last hospital I was in invited me to register for an e-health record. After going to www.ehealth.gov.au I was directed to australia.gov.au where I filled in some more details, until I got: "A previous session has been started and has not completed. Please try again later." The letter indicated that the e-health  record "... will not contain any clinical data", so I could not see what use it would be, even if I could manage to register for one. So at that point I gave up.

Senate Committee Recommends Electronic Health Records

The Senate Standing Committee on Community Affairs has reported on the Personally Controlled Electronic Health Records Bill 2011,19 March 2012. Despite privacy concerns expressed in evidence to the committee, the report largely supports the implementation of eHealth records.

The committee made three recommendations:

1. (2.24) The committee recommends that the review of the operation of the Act that will occur after two years pursuant to Clause 108 specifically consider the issue of the appropriateness of the vesting of the System Operator responsibility in the Secretary of the Department of Health and Ageing as well as possible alternative governance structures.

2. (2.46) The committee recommends that the review of the operation of the Act that will occur after two years pursuant to Clause 108 consider the opt-in design of the system including consideration of the feasibility and appropriateness of a transition to an op-out system.

3. (2.85) The committee recommends that the bills be passed.

From: Chapter 2 - The bills, Personally Controlled Electronic Health Records Bill 2011, Senate Standing Committee on Community Affairs, Parliament of Australia, 19 March 2012.

Contents

• MEMBERSHIP OF THE COMMITTEE (PDF 24KB)

• Chapter 1 - Personally Controlled Electronic Health Records Bill 2011 and the Personally Controlled Electronic Health Records (Consequential Amendments) Bill 2011

  The referral
  Scrutiny of Bills consideration
  Conduct of the inquiry
  Background to the policy development
  Structure of the report
  

  Chapter 2 - The bills
  

  Introduction
  An overview of the PCEHR system
  General support for eHealth
  Governance arrangements
  Functionality of the PCEHR System
  Timeline
  

• Australian Greens Additional Comments

  Australian Greens Comments
  No Access
  Default Access Controls
  Definitions
  Use of data in research
  Australian Greens Recommend

• Dissenting Report by Coalition Senators

  Adoption, Functionality and Interoperability of the PCEHR
  “No Access” Controls
  The Consumer and the Bill
  Privacy
  Legal Liabilities
  Risk and Patient Safety
  Conclusion
  

• Appendix 1
  

  Submissions received
  Tabled documents
  Answers to questions taken on notice
  

• Appendix 2 - Public hearings

An overview of the PCEHR system

2.5 The PCEHR system will enable any Australian to register for an eHealth record and at the time of registering choose who will be able to access their record and the level of access that those parties may have. Consumers who elect to register will also be able to nominate a representative to help them manage their PCEHR.[5] ...

2.11 Submitters to the inquiry have been in favour of the benefits that will result from the implementation of the PCEHR system, many recognising that it is time that such a system were implemented. ...

2.18 Part 2 of the Personally Controlled Electronic Health Records Bill 2011 (PCEHR Bill) sets out the governance arrangements for the PCEHR system.[19] Part 2 identifies the System Operator and specifies advisory bodies to the System Operator.[20] ...

2.21 The Australian Privacy Foundation (APF) went as far as suggesting that implementation of the PCEHR system should be delayed until the governance arrangements set out in the bill are changed. Implementation on the basis that after two years the System Operator role would be transitioned to an independent body was not enough to allay their concerns ...

2.22 The Medical Software Industry Association (MSIA) also 'believes the System Operator (as described) is impossibly conflicted with roles as System Operator, System funder, and NEHTA Board Member.'[26] ...

From: Personally Controlled Electronic Health Records Bill 2011, Senate Standing Committee on Community Affairs, Parliament of Australia, 19 March 2012.

Analysis Closing the Gap Strategy to Reduce Indigenous Disadvantage

Professor John Boulton will speak on "Wedging the gap: Why the rhetoric is wrong for remote Aboriginal child health" at the Australian National University, in Canberra on 29 March 2012. In my view recent government interventions in indigenous communities have failed as they do not empower indigenous communities.

Internet to Empower Indigenous Communities

Public Lecture
Wedging the gap: Why the rhetoric is wrong for remote Aboriginal child health

The credibility of the rhetoric of Closing the Gap is predicated on the demonstration of improvement in Aboriginal Infant Mortality Rates (IMR), child health, and school engagement. The Prime Ministerial Closing the Gap Report 2012 (15 Feb 2012), which stated that the IMR was set to close by 2018 and that early childhood education would be in place for all Indigenous four-year-olds in remote communities by next year, are examples. The reality for children born in remote northern Aboriginal Australia belies these predictions. In this presentation the marked discrepancies in IMR and the increase in risk ratio of death during infancy over the past decades, and separately those for performance on the national school entry Australia Early Development Index, will be presented from an historical and anthropological perspective to illustrate the extent of the barriers to the achievement of equity in outcome for life chances in health and for future economic independence using the example of an Aboriginal child born in the remote Kimberley region of north west WA.

John Boulton has worked in the Kimberley as senior regional paediatrician since his retirement from academic paediatric practice at the University of Newcastle in 2005. His research interests were in growth and nutrition and included the childhood origins of future disease. In the Kimberley he is an advocate of the need to inform medical practice with an anthropological, historical, and demographic perspective. His present investigative focus is on an anthropological understanding of the crisis in Aboriginal child morbidity and mortality. He holds honorary academic appointments at the universities of Sydney and Newcastle.

Real time monitoring of athletes and soldiers in the field

Dr. Ken Taylor at the CSIRO ICT Centre is developing a real time athlete monitoring system for the Australian Institute of Sport. A smart phone relays data, including location and effort, via a wireless network to a web based map and graphs. This allows a coach to monitor the athlete's performance and also talk to them via the phone.

It occours to me that the same system could be applied to military personnel. For training purposes the low cost smart phones could be used, to monitor the performance and safety of the troops of the training range. For use in combat, the system could be integrated with the DOMINATOR Integrated Infantry Combat System being acquired by the Australian Defence Force. This would allow commanders to not only monitor the location of their troops, but also their physical condition, allowing for better planning. Australia could also provide the military forces it trains, with the lower cost smart phone based system.

Public Access Defibrillators

The building I have an office in is having a Automated external defibrillator installed. So I went along to the training course. The IEEE-CS article "Idiot-proofing the Defibrillator" describes how these devices have been automated so that they issue verbal and text instructions to the user and administers electrical shocks. The AED is used when a person's heart suddenly stops (and they are usually unconscious). The model demonstrated by Paul Jones from Australian Defibrillators was the Zoll AED Plus. Another model is the Philips HeartStart Home Defibrillator (AED). There would appear to be scope for more automation with the AEDs. One would be to add a screen with animations (presumably as LCD screens become cheaper due to smart phones, this will be possible). Another would be to have a mobile phone and GPS built into the device to call the emergency services.

Call for IT Industry to Help With Autism

Professor Sylvia Rodger, Head of Occupational Therapy at University of Queensland, has briefed an international autism summit on a Proposal to establish a Cooperative Research Centre on Autism. Key to the proposal is to involve the IT industry in the work. To me this worthwhile, it has been long established that those with Autism Spectrum Disorders have an affinity for IT. Web applications, particularly social networking, on smart-phones and tablet computer applications are likely to be of value. This research will also provide insights into better social networking applications for everyone.

Professor Rodger asked me how to contact major IT organisations. You can't simply email Mark Zuckerberg at Facebook or Larry Page at Google and invite them to take part. So I suggested using the medium of the web. To get an idea in front of the relevant people in government or industry, I put the details on the web and wait for someone to tell those people. Sometimes this does not work, but usually the information gets to those in charge in a few hours or days (formulating the information so this happens is an art).

In my view, research into the use of IT in autism could have benefits for computer applications generally. Autism is characterized by impaired social interaction and and difficulty in interpersonal communication. Just as the web accessibility guidelines have resulted in better web applications for those without a disability, research into autism could lead to better ways to communicate online for everyone. Computer Mediated Communication (CMC) is limited compared to face to face, with limited ability to convey subtle verbal and visual signals. Research on autism may provide insights.

So here are the details of the Autism CRC proposal, for anyone interested:

• Call for cooperative research centre to combat autism, Media Release, Faculty of Health, University of Queensland, 31 March 2011
• Autism crc briefing for international summit (slides)
• Invitation to Participate: Proposal to establish a Cooperative Research Centre for a Better Start and Future for Autism Spectrum Disorders (PDF).
• Contact: Jill Ashburner, Autism Queensland, Phone: 07 3273 0075 Email: Jill.Ashburner(a)autismqld.com.au

Here is a copy of the text of the CRC proposal I converted from PDF to web format for easier access:

Proposal to establish a Cooperative Research Centre for a Better Start and Future for Autism Spectrum Disorders
INVITATION TO PARTICIPATE

The core bid team invites your organisation to join a bid for the establishment of a Cooperative Research Centre (CRC) focussing on understanding, diagnosing and supporting Autism Spectrum Disorders.

PO Box 354 Sunnybank Qld 4109 Phone: 07 3273 0075 Email: Jill.Ashburner(a)autismqld.com.au

CONTENTS

• Background
  • Why pursue an Autism CRC
  • What an Autism CRC could deliver
  • About the Cooperative Research Centre Program
• Proposed core programs of the Autism CRC
  • Core Program 1: A Better Start
  • Core Program 2: Creating a future
  • Core Program 3: Finding a place in society
  • Innovative use of technology embedded across core programs
  • Family supports embedded across core programs
• Appendix 1: Current core participants

BACKGROUND

To date, seven organizations have committed to being essential participants of the proposed Cooperative Research Centre for a Better Start and Future for Autism Spectrum Disorders (CRC for ASD). They include the University of Queensland, Queensland University of Technology, Curtin University, the University of New South Wales, La Trobe University, University of Western Australia and Autism Queensland (see appendix 1 for details). They have each committed to contributing $50,000-100,000 per annum over 10 years to the proposed CRC.

The Autism CRC bid team which consists of representatives from each of these seven organisations is seeking to develop collaborative partnerships with industry and end-user groups/ASD service providers to be involved in a Cooperative Research Centre focussing on the understanding, diagnosis and support of people with autism spectrum disorders (ASD). The purpose of this document is to inform potential participants about the vision and goals of the proposed CRC, the Australian Federal Government's CRC program, and core research program areas of the CRC.

Vision of Proposed CRC for a Better Start and Future for Autism Spectrum Disorders

The Autism CRC will enable earlier, more accurate and efficient diagnoses, and will find more effective and cost efficient ways of enabling children and adults with ASD to achieve valued life outcomes through an end-user driven, cooperative, public-private cooperative research centre.

Why pursue a CRC in ASD?

Autism Spectrum Disorder (ASD) is a lifelong condition affecting at least 1 in 1001 children with an estimated annual cost to Australia of $4.5-7.2 billion. With an unexplained 25-fold increase in diagnosis in the past 30 years, there are now more children with ASD than the combined number of children with cerebral palsy, diabetes, deafness, blindness and leukemia. Currently, diagnosis of autism is imprecise, time-consuming and expensive. While there is a diverse range of intervention programs, further evidence of outcomes for these programs is still required. Schools struggle to provide for children with ASD who frequently under-achieve academically, drop out, or are excluded for behavioural reasons. In adulthood, the majority experience dependence and unemployment, while around one third experience psychiatric illness.

What will a CRC in ASD deliver?

Many of the ongoing demands for disability support, which all governments are struggling to meet, will be alleviated through more accurate, cost- and time- efficient diagnostic procedures, innovative technological applications, evidence-informed interventions, appropriate curriculum and tailored supported education, and independent-living and workplace participation programs. The CRC will also provide a unique longitudinal perspective of the progress of children with ASD as they mature into adulthood.

Only through the establishment of a collaborative, inter-disciplinary research team of experts will we be able to improve the prospects of more than a million

Australians directly or indirectly affected by ASD2. Our team consists of experts in medicine (paediatrics, psychiatry, genetics, epidemiology), pharmacology, neuroscience, psychology, education, speech pathology and occupational therapy working closely with individuals with ASD and their families, schools and support service providers. By ensuring that services across the lifespan are ASD- friendly and evidence-informed, we will enable children with ASD to become citizens who contribute significantly to society. An Autism CRC will also build the capacity of the current and future workforce to deliver evidence-informed programs to people with autism and their families, and enhance the capacity of autism research in Australia.

1 Range of prevalence rates: 1 in 64 or 1.57 (Baron-Cohen, S. , Scott, F. J., Allison, C. Williams, J,, Bolton, P, & Matthews, F. (2009) Prevalence of autism-spectrum conditions: UK school-based population study. The British Journal of Psychiatry (2009)194, 500-509. doi: 10.1192/bjp.bp.108.059345) to 1 in 110 children or .9%. (Autism and Developmental Disabilities Monitoring Network Surveillance Year 2006 Principal Investigators (2009). Prevalence of autism spectrum disorders - Autism and Developmental Disabilities Monitoring Network, MMWR Surveillance Summary, Vol. 58, 1-29. 14 sites, United States, 2006: Centers for Disease Control and Prevention)

2 Estimate based on a prevalence rate of 1 in 100 and people affected (parents, siblings, grandparent, individuals x 20 years.

About the Cooperative Research Centre Program

The Cooperative Research Centre (CRC) Program is a program funded by the Australian Government Department of Innovation, Industry Science and Research.

The purposes of the CRC program are to:

• support medium to long-term collaboration between the producers and end-users of research. An end-user in this context refers to either a public or private entity capable of deploying the research outputs to deliver significant economic, environmental and/or social benefits to Australia.
• provide funding to build critical mass in research ventures between end- users and researchers which tackle clearly-articulated, major challenges for the end-users. CRCs pursue solutions to these challenges that are innovative, of high impact and capable of being effectively deployed by the end-users.
• stimulate a broader education and training experience for postsecondary students, particularly research students, to enhance their employment prospects, provide them with the skills needed to utilise research outputs and produce innovative end-user centred solutions.

  CRC participants:

  At any one time a CRC must have among its essential participants at least one Australian:

• end-user (either from the private, public or community sector); and
• higher education institution (or a research institute affiliated with a university).

  Essential Activities:

  As a minimum, CRCs must undertake all of the following activities:

• medium to long-term end-user driven collaborative research;
• an end-user-focused education and training program at least including, but not limited to, a PhD program that complements the research programs and that builds engagement, innovation and R&D capacity within end-users
• Small to medium enterprise (SME) strategies that build their innovation and R&D capacity;
• utilisation activities to deploy research outputs and encourage take up by end-users.

  CRC Funding

  The CRC program provides funding to supplement contributions by the participants. All participants must contribute resources to the CRC. These include both cash and in-kind, tied and untied contributions, and these must match the Commonwealth grant. However, to be a competitive application, the total participant contributions may need to be in excess of the dollar for dollar matching required by the guidelines.

PROPOSED CORE PROGRAMS OF THE AUTISM CRC

Based on extensive discussions among more than 60 key stakeholders from around Australia and the discussions of the core bid team the following programs will be the focus of the CRC.

Table omitted.

Core Program 1: A Better Start

Diagnosis and Biological Underpinnings of ASD

Core Program 2: Creating a Future

The School Years - Enhancing

Student Learning and the Learning

Experience

Core Program 3:

Finding a Place in Society

Tailored

Supports for Young People and Adults with ASD

Family support embedded across core programs

Core Program 1: A Better Start

Diagnosis and Biological Underpinnings of ASD

Current challenges for end-users

• End-users have expressed concerns about instances of both over- and under-diagnosis of ASD.
• Awareness of the early markers of autism, especially during the infancy and toddler period is lacking in the community, which leads to difficulties for both families and professionals.There is no uniform screening and developmental surveillance program for early detection of ASD in Australia.
• There is considerable variability in the diagnostic processes used in different states across Australia.
• Currently specialist training in identification and diagnostic procedures is inadequate, often leading to inaccurate diagnosis and delays in the delivery of appropriate intervention.
• As current "gold standard" diagnostic tools are very time consuming and require intensive and expensive training, they are not always used.
• There are no set supports and no clear integration or pathway from identification and diagnosis to intervention services, which leads to excessive stress for families and failure to cope and adapt.
• Although the range of phenotypes on the autism spectrum is extremely broad, there is currently no valid means of categorizing subtypes on the spectrum. This heterogeneity is one of the greatest barriers to progress in understanding the underlying biology, aetiology, ongoing development and outcomes in ASDs.
• There is currently no reliable Australian epidemiological data on ASDs.

  Deliverables:

• An internationally recognised cohesive group of ASD researchers from biological, medical and social science backgrounds will work collaboratively to address the current challenges surrounding early identification and diagnoses of conditions on the autism spectrum.
• National and international research efforts will lead to identification and validation of pre- and post-natal biomarkers (e.g., bio-chemical markers in blood and urine tests, growth parameters, brain scans) that have the potential to be included in diagnostic protocols
• Autism phenotypes will be profiled (matching genotyping with biochemical, neuro-cognitive and observable behavioural profiles) from early in development, which will also foster longitudinal studies of biological and behavioural growth and development.
• A DNA-chip or equivalent high-throughput genetic screen from identified biological markers to predict genetic susceptibility for ASD will be developed. Biomarkers on the chip may also be used to identify subtypes of ASD.
• Recommendations will be made regarding a national developmental surveillance program and a pilot program will be delivered to identify ASDs prior to 2-years of age.
• An awareness raising and training program around the early signs of ASDs for parents and professionals will be developed.

• A nationally endorsed protocol for accurate, efficient and evidence- informed diagnostic procedures for ASD will be developed.
• This nationally endorsed protocol for accurate, efficient and evidence- informed early identification and diagnostic procedures for ASD will facilitate the collection of epidemiological data, sorely needed in Australia. This will allow estimation of current and future demand for services on the basis of strong evidence.
• A national set of competencies for diagnosis of autism by health practitioners will be developed.
• Postgraduate educational programs and qualifications in regard to the early identification and diagnoses of ASDs will be developed for national roll out.
• A program for supporting families during the period of diagnosis, building on the Helping Children with Autism funded Early Days Workshops, will be developed. This will incorporate appropriate information, counselling and support for families.
• Recommendations for seamless integration between diagnostic and intervention services, and a pilot program will be delivered.

  Social and economic benefits to Australia

• Identification of biomarkers to specify autism spectrum risk prior to the development of behavioural and cognitive manifestations will lead to early and accurate diagnosis and intervention approaches.
• Identification of biomarkers and the associated behavioural developmental trajectories that differentiate subtypes of ASD will enable services to be targeted to specific needs associated with these different subtypes including preventative and treatment approaches.
• Development of uniform screening and developmental surveillance programs for early detection of ASD in Australia, and promotion of knowledge around the early behavioural phenotype/s will also lead to more efficient and accurate early identification.
• More accurate, time-efficient and earlier diagnosis will reduce the cost associated with over-diagnosis and under diagnosis and enable earlier access to intervention for children with ASD, reducing the long-term impact of the disorder
• Accurate early identification and more efficient diagnosis, together with the development of a program to support families during this period will lead to increased capacity in the families around the support of their child, and ultimately to better developmental outcomes for the children and their families.
• Improved training of diagnosing practitioners will enhance diagnostic accuracy and efficiency and be attractive to overseas student markets.

Core Program 2: Creating a Future

The School Years - Enhancing Student Learning and the Learning Experience

Challenges for end-users

• Academic underperformance relative to level of ability among students with ASD
• Challenges with behavioural regulation in classrooms (frequently resulting in a suspension, exclusion or use of home schooling as a last resort)
• High incidence of students with ASD experiencing bullying in schools
• High incidence of anxiety and depression and other mental health issues among students with ASD (particularly in late primary school and high school)
• Students with ASD with sensory processing issues frequently find school environments overwhelming (e.g., excessive noise levels, visual clutter)
• How to address the unique needs of students with ASD within The Australian Curriculum framework (a.k.a. National Curriculum)
• Lack of knowledge and understanding of ASD amongst teachers and other school staff
• Need for current understanding arising from brain research to be applied to educational programs for students with ASD

  What the CRC will deliver?

• Nation-wide research into the key elements of effective ASD-friendly education programs including the incorporation of:
• ASD- friendly pedagogies (e.g., routine use of visual supports, use of structure and explicit teaching)
• Innovative use of technology (e.g., iPads, iPods, iPhones, interactive whiteboards, computer software technology)
• ASD-friendly classroom environments (e.g., reduced background noise, use of visual structure, architectural design)
• An effective social emotional curriculum
• Positive behaviour supports
• Effective communication supports and language interventions
• ASD-friendly teaching principles (e.g. universal design, enhancing access to the Australian Curriculum)
• Educational programs of students with ASD guided by current brain research, through collaboration between researchers from multiple disciplines including educational psychology, allied health, neuroscience and education.
• Research on the effectiveness of individualised educational supports to cater for the specific needs of distinct cohorts within the autism spectrum (what works for which child, when?)
• Research on key elements to support successful transitions (from early intervention to early years schooling, transitions from primary school to middle years school/high school etc.)
• The use of uniform data collection methods and outcome measures to evaluate educational programs across the nation will provide a shared language with regard to educational, participation, and behavioural outcomes specifically suited to the Australian context.

• Training of teachers and other school staff on ASD-friendly curriculum approaches and inclusive assessment delivered through roll-out of a nation-wide in-service program.

  Social and economic benefits to Australia:

• Enhancing educational approaches and processes will result in greater school success and retention in schools, access to tertiary education and employment and capacity for independent living in adulthood and, ultimately, reduced need for income and living supports of adults with ASD.
• Nation-wide implementation of uniform outcome measures and data- collection procedures will enable consistent evaluation and long-term monitoring of Australian children with ASD.
• Students with ASD across Australia will have equitable access to quality education guided by ASD-friendly principles to enhance their access to the Australian Curriculum.
• The capacity of Australian schools to deliver a quality education to students with ASD will be enhanced by better training and professional development for teachers and other school staff
• The educational approaches utilized to enhance the learning of students with ASD have a broader application and can be successfully applied and utilized with all learners.

Core Program 3: Finding a place in society

Tailored Supports for Young People and Adults with ASD

Current issues for end-users

• The limited evidence available suggests high levels of adverse adult outcomes such as long-term unemployment, dependence on families and social isolation, and secondary negative impacts on the health and wellbeing of individuals and families.
• Parents describe the need for interventions to address self awareness, relationships, autonomy and community living challenges.
• Little is known about effective interventions for adults with ASD to address participation in tertiary and vocational education, and workforce participation (employment).
• There is a very high prevalence of secondary mental health issues such as severe anxiety and depression in young people and adults with ASD that impact on their participation. Challenging behaviours also frequently impact on their participation.

  Deliverables

  The focus of the CRC on Australia-wide research will ensure:

• Accurate Australian baseline information about adult outcomes for people with ASD and the impact on families will be collected.
• A protocol for vocational assessment and guidance for post school study or work will be developed.
• Age appropriate adult programs addressing social interaction skills, emotion regulation, and relationships will be developed, evaluated and rolled out nationally.
• The effectiveness of already established pilot programs to support adolescents and adults with ASD to participate in tertiary and vocational education sectors will be identified and described in detail. The programs will include support for young people with ASD, academic staff, disability support staff and instructors.
• Australian models for employment for people with ASD, (e.g., in software testing) and other supported and open employment intervention models (e.g. AIM employment in WA) will be developed, evaluated and extended to other sites/states.
• Awareness of the strengths and challenges of people with ASD will be heightened in tertiary and vocational education facilities and workplaces, through customised training programs
• Opportunities to enhance social and community engagement and independent living (e.g., leisure, social interaction, community access, self maintenance) will be developed and evaluated.
• Social and emotional outcomes and quality of life, as well as community engagement and participation will be evaluated.

Social and economic benefits to Australia

• Adults with ASD will increase their participation in vocational and tertiary education and employment and community engagement, and reduce their dependence on families and spouses.
• The economic costs associated with income and living support will be identified and reduced.
• Effective ways of supporting the social emotional well being and quality of life of adults with ASD will be developed and this will enhance their societal participation and reduce long-term use of services including mental health services.

  Innovative use of technology embedded across core programs

  Current challenges for end-users

  As people with ASD are almost universally visual learners and are less adept at processing speech, gestures and facial expressions, they naturally gravitate towards technology, which offers predictable and consistent environments with minimal distractions and the flexibility of working at their own pace. However, research on the effectiveness of different types of the hardware (e.g., laptops, iPads, iPods) and software in achieving particular outcomes is lacking.

• Specific outcomes that require further evaluation include the use of technology:
• as an alternative means of communication for children who have limited speech
• to support the understanding of social interaction (e.g., human gestures, emotions and facial expressions and appropriate ways to interact socially) using software applications
• to assist with organisation (e.g., visual schedules, electronic calendars, task sheets and electronic reminders)
• to support educational outcomes by (a) accommodating the learning styles/strengths of children with ASD and (b) improving written output (e.g., use of technology as an alternative to handwriting)
• as a vocational opportunity for young people with ASD for whom this area is a strength
• Services for children with ASD and their families in regional and rural Australia are infrequent and often inadequate. Possible applications of remote technologies using Australia's new high-speed National Broadband Network to overcome the tyranny of distance include:
• direct interventions with people with ASD
• support of professionals in health and education

• support of diagnosis of ASD, and diagnosis and management of secondary mental health issues particularly where there is limited access to paediatricians or psychiatrists

  Deliverables

• Core program 2 will deliver research into the effectiveness of technological applications as an adjunct to educational approaches
• Core program 3 will develop and evaluate employment programs focusing on technology for young people with ASD for whom this is a strength>
• All core programs will incorporate cost-benefit analysis of the use of remote technologies to deliver supports to remote areas using the National Broadband Network

  Social and economic outcomes to Australia

• Better outcomes for people with ASD in terms of communication, social understanding, education and vocational opportunities.
• Economic benefits arising from the Australian development of innovative technological applications, which would have both domestic and overseas markets.

  Family supports embedded across core programs

  Current challenges for families

• Families often report delays in diagnosis and high levels of stress during the gap between diagnosis and accessing a suitable service.
• Families of school age children report that school staff often do not appreciate the impact of ASD on their child and consequently misunderstand their child's learning needs and behaviour. Where routine school behaviour management strategies prove to be ineffective, schools frequently respond by suspending or sending students home, or encouraging parents to home school the child. As a result some parents experience difficulties in accessing a quality education for their child, and may be forced to reduce or abandon paid employment in order to care for or home-school their child.
• Parents often describe the experience of their child leaving school as "falling off a cliff" because of the challenges that their adult child experiences in accessing vocational or tertiary education, or finding employment. Many young people with ASD become socially isolated in the family home and continue to be dependent on their families as adults.
• When compared to other families, families of children with ASD are known to experience higher rates of anxiety and depression, and to have lower family incomes as result of the need to make alternative employment choices to care for their child.

Deliverables

The concerns of families of children with ASD will be addressed by the following programs:

• Core Program 1 will focus on better developmental surveillance, earlier, more accurate diagnosis, and a more seamless transition between diagnostic and intervention services.
• Core program 2 will focus on evaluation and implementation of ASD- friendly classroom programs and intensive social/emotional/self- regulation programs for students with complex behavioural needs. Training of school staff and raising awareness of the needs of students with ASD within school communities will also be an outcome of this program.
• Core Program 3 will focus on evaluation and implementation of adult programs addressing social interaction skills, emotion regulation, and relationships, and supports to enable adults with ASD to participate in tertiary and vocational education, employment and/or community programs.

  Social and economic benefits to Australia

• More responsive services from children, adolescents and adults with ASD will reduce the stress experienced by families.
• Improved access to a quality education and/or post-school options such as vocational or tertiary education, employment and/or community programs will enable parents of a children or adults with ASD to participate in the workforce and in community life to the same extent as other parents. Increased workforce and community participation of family members will result in improved family well-being, higher family incomes, and benefits to the Australian economy.

APPENDIX 1

CURRENT ESSENTIAL PARTICIPANTS

The University of Queensland

UQ has established an ASD Research Network bringing together staff in health and rehabilitation sciences, paediatrics, psychiatry from the Faculty of Health Sciences, psychology from the Faculty of Social and Behavioural Sciences, and neuroscience from the Faculty of Science and researchers in genetics and biomarkers, and psychological/cognitive science from the Queensland Brain Institute. This network places UQ in a strong position to harness this capacity to collaborate with researchers nationally and internationally to provide solutions to the issues raised by end users (individuals with ASD, their families and service providers).

Autism Queensland

Autism Queensland is a community-based, not-for-profit, incorporated association and the peak provider of services to children and adults with ASD in Queensland. Autism Queensland currently has over 8,500 registered clients from all areas of Queensland and offers a wide range of services including advocacy, family support services, family support groups, state-wide outreach services, information and help-line, accredited independent autism specific schools, early intervention programs, Autism Advisor program, respite services, and adult accommodation and recreation groups. Autism Queensland's

Research and Development team aims to conduct and support research that will enhance the potential of individuals with ASD to achieve valued life outcomes and improve the quality of life of people with ASD and their families. Current Autism Queensland research programs focus on (a) sensory processing;

(b) educational outcomes and (c) the use of evidence-informed practices and training needs of professionals who provide services to people with ASD.

Queensland University of Technology (QUT)

QUT has been acknowledged for its world-class research across a wide range of disciplines in the first comprehensive evaluation of research quality in all Australian universities. QUT has a strong eclectic knowledge base and research network drawing on expertise from health, science and technology, law, the built environment as well as all areas of education from early intervention through to senior schooling. This collaborative research partnership has as its main aim improving education outcomes for children and adolescents on the spectrum. The team has strong links to research networks both nationally and internationally, allowing them to capture information, and appropriately adapt it to and implement it within the Australian context. This allows them through their research within the Australian context to not only support the diverse needs of individuals on the autistic spectrum, but also their families and personnel who work with them.

La Trobe University

La Trobe University is recognized as a hub of excellence in autism, with the first research facility in Australia dedicated to ASDs, and the Victorian Autism Specific Early Learning and Care Centre. The Olga Tennison Autism Research Centre provides a vehicle for research, training opportunities, and collaboration between community services and research centres / universities involved in autism research both in Australia and overseas. Our mission is to advance knowledge of the nature and causes of Autism Spectrum Disorders, as well as to develop and study evidence-based strategies for supporting children and families affected by ASDs. Our research is conducted in a child-

friendly, purpose-built research facility within the School of Psychological Science and the Early Learning Centre. It allows for studies in all our areas of expertise including studies of physical growth and development, sleep patterns and biological (including genetic) markers. We also have access to computational facilities (including that required for biostatistics and bioinformatics as well as wet-lab facilities).

Curtin University

Curtin is widely recognised for the practical and applied nature of its courses and its innovative research which focuses on solving real world problems. Curtin has always fostered successful partnerships with community, industry, business and government to enhance the quality of our scholarship, teaching and research. With a strong commitment to end-user focussed research and growing capacity in the ASD field, especially in applied technologies, Curtin has been working with the University of Western Australia (UWA) and the Telethon Institute of Childhood Research (TICHR) in the establishment of the Western Australian Cooperation for Autism Research & Education (WACARE) that allows the complementary skills of each organisation to come together to better support the service providers and the individuals and their families affected by ASD.

University of New South Wales

UNSW brings strong partnerships between academic researchers and local health and educational service providers, offering ideal conditions for research into improvement in diagnosis and treatment across the age span. Academic contributors include faculty in psychiatry, pediatrics, and cognitive neuroscience, both through UNSW and through our close collaborations with Macquarie Centre for Cognitive Science, University of Sydney, and the Australian Institute of Health Innovation. Partnerships of relevance include the Autism Specific Early Learning and Care Centre in Liverpool, Sydney Children's Hospital, and collaborative work with other public and private health providers to improve services for individuals with Autism of all ages.

University of Western Australia

UWA is an international leader in autism research, with particular expertise in paediatrics, psychology, psychiatry and diagnostics. Through the Telethon Institute of Childhood Research (TICHR), UWA has developed nationally-unique databases for autism research and monitoring, including the WA Autism Registry (prevalence monitor) and the Western Australian Autism Biological Registry (biological repository). UWA recognises the importance of a collaborative approach to autism research and has established close partnerships with a number of international institutions (e.g., University of Oxford,

University of Bristol) as well as Western Australia's largest autism service providers

(e.g., including the WA Department of Health, Autism Association of WA, Autism West, and Intervention Services for Autism and Developmental Delay). ...

Adapted from: Invitation to Participate: Proposal to establish a Cooperative Research Centre for a Better Start and Future for Autism Spectrum Disorders, Autism CRC Bid Team, 2010

Making Pandemic Influenza Plans Visible

The report "Pandemic (H1N1) 2009 Influenza Outbreak in Australia: Impact on Emergency Departments", indicates that most Australian hospitals had a plan to deal with such an emergency, the plans were activated and were useful. But 43% of hospital staff in did not know the plans existed or were in force. There were also inconsistencies found in plans between different parts of the health system, both between GPs and hospitals and also different specialists in the hospitals. The report emphasised the importance of community and public health involvement and communication strategies. One obvious tool to use is the web. Plans for such health emergencies should be published online. The documents should be in an easy to read format which doctors (and others) can read on their smart phones. Online consultation tools can be used to get wide input. This might provide a useful case study for COMP7420: Electronic Data Management.

On 25 April 2009, the World Health Organization (WHO) determined that
member states and partners should increase their surveillance programs and
prepare for an epidemic14. Australia activated its pandemic plan, The Australian Health Management Plan for Pandemic Influenza 2008 (AHMPPI 2008)19, in line with this recommendation15. ...

There is contradictory information in pandemic plans devised for different sections of the health care system. For example a 2003 survey, undertaken on behalf of the Australian and New Zealand Intensive Care Society, identified hospital EDs as additional short-term bed spaces for ventilated patients in the event of a pandemic8. This ignores the issue that, during a pandemic, EDs have increased demand on their space and resources and cannot be expected to also function as satellite ICUs. ...

Pandemic plans

About two out of five (39%) of respondents reported that they knew that their hospital or ED had a written pandemic plan before the onset of the (H1N1) 2009 influenza pandemic as shown in Table A-8. In most cases, these plans were part of a hospital plan, but 50 respondents did report working in an ED with a stand-alone ED pandemic plan. Notably, a large proportion (43%) of respondents did not know whether a plan existed for their department or hospital. These responses differed strongly by discipline, with more than three-fifths of registrars (62%) falling into the ‘don’t know’ category, compared to only 33% of SMOs, and 34% of nurses.

Of those reporting the existence of a pandemic plan, two-thirds (66%) knew that it had been activated during the (H1N1) 2009 influenza pandemic, and 19% knew it had not been activated. The remaining 15% did not know the status of the pandemic plan activation in their department. Of those reporting an activated plan, the overwhelming majority (98%) stated that it had been at least somewhat useful in dealing with Pandemic (H1N1) 2009 Influenza. The overall mean score was 3.6 on the 5-point scale ranging from ‘not at all useful’ to ‘very useful.’ Again, registrars were more likely to report not knowing whether the pandemic plan had been activated. ...

Pandemic plans

The parts of pandemic plans found useful by respondents included the policies, procedures, and protocols, which had been set up in advance of the pandemic. These included guidelines for triage, isolation, cohorting, proper use of PPE, and other infection control measures. Arrangements for obtaining extra staffing and more PPE were also welcomed, as was the provision of separate triage and flu clinics.

Limitations to pandemic plans included a lack of specificity to individual hospitals, Pandemic (H1N1) 2009 Influenza Outbreak in Australia: Impact on Emergency Departments. 38 with some hospital designs making them difficult or impossible to implement, particularly with respect to the isolation of potentially infectious patients and appropriate patient flow from triage, through the department, and home or to wards. Many respondents stated that the plans were designed for a far more virulent disease. Plans also did not take pre-existing heavy workloads into account.

Suggestions for the future included greater involvement in planning of major stakeholders including EDs, GPs, public health, infection control, and pathology clinicians, as well as members of the community. Participants recommended implementing procedures to divert patients who could more properly be seen by GPs and establishing flu clinics out of EDs. Better stockpiling and release of PPE and antivirals was also mentioned, together with separate flu clinics close to EDs, with some designated flu hospitals. Respondents felt there should be more preparation and practice of any future plans. They also raised issues about creating surge capacity within hospitals, particularly by addressing the pre-existing problem of access block, and the necessity of special pandemic funding in the event of a pandemic. ...

Pandemic and disaster plans

All but one of the directors reported that a pandemic plan was in place for their department before Pandemic (H1N1) 2009 Influenza, as shown in Table B-3. Of the 11 plans, 10 were part of a general hospital plan and one was a stand-alone ED plan. In seven out of ten cases, the pandemic plan was activated during the (H1N1) 2009 influenza pandemic, and amongst these responses, most directors found the plan useful. In responding to open-ended questions about what was specifically useful, or not useful, about the activated pandemic plan, directors referred to clear guidelines (e.g. for triage), lines of responsibility, setting up a ‘fever clinic’, and the involvement of other areas of the hospital, as being useful. Several of those mentioning the ‘not useful’ aspects of their pandemic plan also referred to other members of their hospital’s staff, saying, for instance, that they had not shared the load. Also mentioned as problematic was the lack of staff management strategies, and that
staff had not been pre-fitted for respirators.

Directors were given the opportunity to make suggestions for developing ED-related pandemic plans for managing future pandemics. Directors of Emergency Medicine recommended that flu clinics be established early, so that EDs are not required to deal with the full volume of patients. They pointed to the critical importance of community and public health involvement from the beginning. Improvement in communication strategies was also mentioned, as was better provision of isolation facilities within EDs and better staff management strategies (filling in, redeployment,
etc.).

Directors were also asked whether their hospital’s formal disaster plan had been activated during the (H1N1) 2009 influenza pandemic. No disasters plans were activated. ...

Of significance was the relationship between the pandemic planning approach and disaster planning. A small proportion of staff reported the activation of their organisation’s disaster plan. Some individuals felt activating disaster plans would have delivered a higher level of support. The relationship between pandemic and disaster planning needs to be clarified. ...

From: "Pandemic (H1N1) 2009 Influenza Outbreak in Australia: Impact on Emergency Departments". FitzGerald, Gerard and Patrick, Jennifer R and Fielding, Elaine L and Shaban, Ramon Z. and Arbon , Paul and Aitken, Peter and Considine, Julie and Clark, Michele J. and Finucane, Julie and McCarthy, Sally M and Cloughessy, Liz and Holzhauser, Kerri (2010), QUT, Brisbane QLD Australia.

Broadband Nurses to Lower Medicare Cost

From 1 November 2010 patients can claim on Medicare when
examined by suitably qualified nurses. The nurse can examine a patient on their own (without a doctor), write some prescriptions and referrals.

What might be useful is nurse practitioners linked to doctors by broadband. A nurse practitioner could record the patient history and make an examination. Then, where necessary, the nurse could contact a doctor online. The patient details would appear on the doctor's screen along with live video. The doctor could then make a quick assessment. In most cases they would simply confirm the nurse's diagnosis. But they could request further tests, write a prescription, or ask the patient to come in person.

As the nurse practitioners can now set up practice for themselves, this could change the balance of power in the medical profession and lower costs. Most visits to the doctor would be eliminated. The nurse would be the one the patient goes to see and so the nurse would decide if patient needs to see a doctor and which doctor they will see.

Beauty Bar for Travellers Sox

When travelling, for a week or a month, I take one carry-on sized wheeled backpack, so space is at a premium. In place of soap, shampoo and laundry detergent, I pack a detergent bar, to wash hands, hair and clothes. This looks like a cake of soap, so does not worry security staff as much as a bottle of liquid and bag of white powder would.

Previously I used laundry detergent bar (Sard Wonder Soap), but I noticed this removed colour when washing old socks, so I worried what it might do to skin. Dove beauty cream bar and similar products are detergent bars, using the same sort of mild detergents used in liquid body wash and shampoo, plus some "moisturisers".

I could not find an independent review of the Dove bar, but Choice Magazine rated Dove shampoo highly. I have found the Dove bar works fine for washing hands and hair. It can also be used for hand washing clothes and will still lather in salt water.

Aldi are selling regular 100g Dove bars for 99 cents (about four times the price of ordinary soap). But I am using the "extra sensitive" perfume free version which is $2 for 100g in packs of four at supermarkets.

ps: Amazon.com also offer "Dove For Men", which comes in a grey wrapper and presumably has a masculine perfume. ;-)

iPad in medical training

The EDUCAUSE Instructional Technologies Constituent Group has been discussing use of the Apple iPad in education. What struck me was the number of universities introducing the iPad for training doctors, pharmacists, dentists and nurses.

Apple on their own web site feature the iPad for Post-critical care. That is in educating the patient about what to do to recover. This is an interesting choice of application, as it avoids most of the issues to do with reliability, performance and security, which apply to medical records applications. The iPad would be used essentially as a fancy flip chart to show the patient diagrams. So it does not much matter if it breaks and it would not need to hold sensitive medical records.

If the iPad works okay in training, as I expect it will, this will create a demand for tablet computers to be used throughout medicine. There have been attempts at using tablet computers previously in hospitals, but these have tended to be large, heavy devices with cumbersome software. The iPad might be what makes e-heath popular and practical.

The ACT Health Library, provided by the Australian National University, has a list of iPhone/iPad/Mobile medical reference works available. This includes several reference works which require medical staff to register with their corporate identification to gain access. Others are apps for a moderate charge. There are also dozens of free items for medical students and patient education.

ACT Health Records Legislation

The ACT Minister for Territory and Municipal Services presented the "Territory Records Amendment Bill 2010" bill to the ACT Legislative Assembly on 23 September 2010. As the explanatory statement says the new legislation is the result of a review to the Territory Records Act 2002 in 2009/10 and brings government recordkeeping under the one set of rules. Most significant is the effect on Health Records kept by government. These will still be protected by separate priovacy legislation but but allows ACT Health to have an integrated Records Management Program.

Hopefully this will enable ACT Health to implement an integrated electronic records management system for ACT hospitals. Recently I attended Canberra Hospital to hear of the results of medical tests, only to be told that the hospital had no record of the tests. The tests had been outsourced from Canberra to Calvary Hospital and there is no sharing of records, electronic or pn paper, between the two publicly funded hospitals. So the doctor then has to spend 20 minutes phoning Calvary Hospital and arranging to have the test results faxed over. Also the doctor was unable to find any previous test results from my previous stay in Canberra Hospital, due to a problem with the Canberra Hospital computer system.

This failure of the ACT Health system not only would have resulted in a waste of public money (with five times the cost is staff time) but also places the health of patients at risk. Hopefully the new legislation will enable ACT Health to implement an integrated electronic medical record system for publicly funded hospitals in Canberra.

As I am designing a course in Electronic Data Management for ANU , I might use the design of electronic records system for Canberra hospitals as a case study. The ANU teaches doctors in Canberra's hospitals and so I can teach the doctors who will need to use the system how that system should work and how to use it.

Anti Slip Treatment for Tile Floors

Worried about slipping on the bathroom floor, I purchased a 1 Litre bottle of "DTA Domestic Anti Slip" at Bunnings Hardware (about $40, made by DTA).

This is not a coating for the tiles, but an acid which etches the tile to make it rough (as used to etch glass). The bottle comes with numerous safety warnings. I found a broom, with plastic bristles and a long handle, an effective way to apply the acid (along with rubber gloves and eye protection). Realising that I would not walk right up against the walls, I left a strip about 5 cm wide untreated around the walls, to avoid splashing the liquid on the walls.

The bottle says it will treat up to 9 square metres, but I found there was about half a bottle left after finishing the bathroom, so I also treated the kitchen floor and half the balcony. In total the one litre treated about 14 square metres of tiles.

The treated tiles have a slightly satin finish, compared to the glossier untreated tiles. However, the effect is not readily apparent and quite pleasing. While etching the floor tiles, the treatment had no apparent effect on the chrome metal drains in the floor, paintwork, grout or wall tiles (it did not even kill the mould in the shower recess).

To test the surfaces, I washed the floor with suds from the washing machine, which usually leaves the tiles too slippery to walk on. The treated tiles were no longer slippery and were safe to walk on. Assuming the tiles are really etched, the treatment should be long lasting. However, I will need to see what happens when the floor gets dirty.

According to DTA the product contains Fluoride.

Slippery tiles may seem a trivial topic, but slips and falls cost about half a billion dollars per year in Australia in hospital treatment.

Building the Australian National Health Network

Dr George Margelis, from Intel's Digital Health Group, talked last night in Canberra on "The Patient Journey - What role for IT?" he will be repeating this in Brisbane 17 March.

Dr Margelis, showed a number of interesting before and after video segments of problems with the health system and how ICT could help. Normally I dislike company videos in presentations as they are advertisements for companies. While these were clearly produced for Intel, they were relevant to the topic.

The first video was of someone being rushed to hospital in an ambulance (which I could identify with having had it happen to me). This illustrated how currently medical staff in the ambulance and the hospital use computer based systems, but these are not linked, so that information has to be relayed by voice or paper. A future scenario showed the patent details being shared online between the ambulance and the hospital. Dr Margelis emphasised that none of the technology envisaged was exotic and was not already in use in other fields. It was a matter of integrating it into the medial system in a way which helped the medical staff and the patents.

The major issue was to network records so that dispersed medical services could serve the patient. Dr Margelis showed a scenario networking the ambulance to the hospital, to the remote specialist.

In a later scenario Dr Margelis showed patients using a home based system. This not only monitored the patent and prompted them to take medication, but also connected them to their helpers and medical staff, using a wireless mHealth device.

One problem I had with these scenarios is that they were applying computerisation to an existing system without considering how to change the system. As an example, it is difficult for a hospital to obtain patent's GP records in an emergency, because the records are stored on paper in dispersed GP offices. The Intel solution is to network the records. An alternative low technology solution would be to group the GPs in clinics. These clinics would then be large enough to employ professional record keepers and be open 24 hours a day, so they could respond to emergency record requests. My doctor would not like this as they see themselves as a provider of custom personal services, not part of a corporation. However, the alternative ICT solution will result in some loss of their autonomy.

What Dr Margelis presented was a clear logical vision. The question this raises is why has it not been done? This is not a technical issue, but still an issue for ICT professionals. It is not enough to we have a solution, it is the customer's fault for not buying it. The underlying issues as to why such systems are not implemented need to be addressed.

The Prime Minister has proposed to take over all public hospitals in Australia. As Dr Margelis pointed out, the public hospitals are the smallest and least important part of the health care system. There is a risk that the government will concentrate on hospitals, resulting in better hospitals but an overall decline in the quality of health care and an increase in costs. This would be similar to the situation where the government funded insulation in homes is likely to increase energy use, rather than reduce it. Similarly a networked national hospital system may increase costs and reduce the health of the population.

Some far less glamorous, less expensive, more local community health initiatives, might be far more effective. These could still make use of ICT.

The NBN Company provides one possible model for the health care reforms. Under this approach the government announced an impressive sounding multi-billion dollar national broadband network (NBN). They then set up a government owned company to implement it. What NBN Co has done is architect a national system, but are first implementing small scale local projects. These projects are small enough to be implemented efficiently and provide local benefits in the short term, so the government can be seen to be delivering services (in what might happen to be marginal electorates). One day all these system might join up into the envisaged national system, but in the interim they will provide useful local services to the community and political kudos to the government.

Current attempts at national e-Health standards are mired in the need to have a consultative process between government and industry. NBN overcame this problem with broadband standards by consulting with parties, but making clear that as a company they were not required to wait for everyone to agree and were going to make a decision and then implement that decision. A NHN Co (Australian National Health Network Company) could make similar decisions for e-health standards and the implement them.

The government could announce the goal that all public hospitals would be networked and all patent electronic health records would be available by a set date. Governments and companies which did not wish to cooperate would not be funded.

One interesting question asked was when will patents will be able to ask their doctor to put their records on Google health. This might be useful for the patent, but the doctor would need to be compensated for the extra effort in working out how to do this.

Another question was on casemix to provide appropriate incentives for keeping people healthy, instead of dispensing medicine to them. If there were the right incentives this would provide an incentive for better ICT systems to keep the patents out of hospital.

It was pointed out that there are now international standards for medical imaging (Xrays). There is now under way for standards for the medial records delivered to the patent in the home, so that we will not first build proprietary systems and then have to convert to real standards. It may be that Australia has to accept an international standard which is not as good as a local standard, but which is adequate and has the advantage of widespread acceptance.

See also: ICT in Health Delivery in the 21st Century in 11 November 2008.

Changes Needed to PBS prescription forms

Today I went to the chemist to have a prescription filled. The Pharmacist told me they could not do so as I had presented only the duplicate copy of the prescription. They told me this was a common problem with many customers only bringing in half the form. The PBS prescription forms are supplied by Medicare Australia, and there appear to me to be several flaws in the design of the form. This is not simply an inconvenience as the result is that the patient does not get required medicine, thus placing their health at risk.

What I took to be two separate prescriptions joined by perforations are in fact an original and a duplicate. Unfortunately this is not made clear on the form. There is a section of the form marked with a light cross hatching pattern which faintly spells out "Pharmacists patent COPY" sideways. Apart from being almost illegible, the original and duplicate are in the wrong order. The copy is o the left, when it should be on the right, as English is written from left to right, an original should come first. Also if old fashioned carbon paper was used, the copy would be underneath and therefore second in a pile of papers).

Medicare needs to redesign this form to make it usable. An interim workaround would be to instruct doctors (and their software suppliers) to print an appropriate message on the form.

Cordless drill used for brain surgery

As reported by the ABC and other media, Dr Rob Carson used a DeWalt cordless drill to a hole in the skull of a 12-year-old boy top relieve bleeding to the brain in Maryborough, Victoria.While obviously an emergency measure, cordless tools would seem to be a good choice for this as they would reduce the risk of electrocution. From the photos shown in the media, the unit used appears to be a DEWALT DC759KA 18-Volt Ni-Cad 1/2-Inch Cordless Drill.