E-Health to Assist Ill and Disabled Young Australians Communicate and Interact.

The following was released today – and I felt it was worth a post. Sounds like a great idea to me!

New Livewire Online Community Connects Young Australians Living With A Serious Illness, Chronic Health Condition Or Disability

The Hon. Senator Conroy, Minister for Broadband, Communications and the Digital Economy, today launched Livewire, a new online community which is the first of its kind in Australia, to help improve the emotional and social wellbeing of children and young people aged over 10 and under 21, living with a serious illness, chronic health condition or disability.

A wholly owned subsidiary of the Starlight Children’s Foundation, and co-funded by the Australian Government’s Clever Networks program, Livewire is designed to provide a free, safe and supportive online community for children and young people to hang out, connect, share experiences, creatively express themselves and know that they are not alone in their situation.

An estimated 450,000¹ young Australians aged between 10 and 21 are currently living with a serious illness, chronic health condition or disability. These conditions can profoundly impact their everyday lives, leading to frequent absences from school, sport and other social activities. The internet provides an innovative way to reach and connect these young people through a supportive online community.

“Connecting and supporting young people with a serious illness, chronic health condition or disability through a safe online community has been a vision of the Starlight team for many years,” said Jill Weekes, CEO of the Starlight Children’s Foundation. “Livewire helps to distract that young person from their pain, helps them better understand their illness and connects young people facing similar challenges so that no one feels alone.”

Unlike other social networks, Livewire is a secure, moderated community tailored to the needs of its private members.

“By combining the latest in online and mobile technologies with a safe and secure approach, we are developing a great online community for young people who are also dealing with a disability, chronic condition or serious illness,” said Omar Khalifa, Managing Director of Livewire. “With video, music and games, Livewire is a fun place to check out. However, it’s the young people who create blogs, chat and interact that will shape Livewire, keep it relevant and a make it a really great place to hang out.”

The Hon. Senator Stephen Conroy, Minister for Broadband, Communications and the Digital Economy, said “The Livewire online community is a great example of broadband and digital technology assisting the support and well-being of people whose lives have been disrupted by chronic illness or disability. Livewire helps young people to stay in touch with those they love and to connect to gain support from others who may be sharing a similar situation.”

Livewire aims to have a significant impact on the social and emotional wellbeing of its members, to help relieve stress and anxiety, alleviate boredom and to help empower them to develop new life skills and make new friends.

Prominent child and adolescent psychologist, Dr Michael Carr-Gregg commented, “Too often, it goes unrecognised that young people with chronic illness or disability can be affected by anxiety disorders, mood disorders, self harm and even suicidal tendencies, and that these go hand in hand with their situation.

“Livewire is wonderful because you have 24 hour a day, immediate connection with a community of people feeling exactly the same way. This can instantly reduce their sense of isolation and put them in touch with someone who understands,” he concluded.

Livewire complies with strict safety measures to ensure the safety and security of its members. Each member’s parent or guardian is contacted personally to verify their identity before joining the community. What’s more, chat hosts trained by the Australian Federal Police are present seven days a week to moderate discussions.

The program is made possible by an investment of $7.2 million from the Australian Government’s Clever Networks program, and support from its launch partners. This funding has enabled Livewire to develop a long lasting, sustainable program that will support, inspire and encourage its members.

Livewire aims to connect 20,000 young people, siblings and parents by the end of 2009, and will work with and through other Not For Profit organisations, such as The Spastic Centre and Diabetes Australia to provide access to Livewire to its eligible members.

The next phase of Livewire will be the launch of Livewire Mobile which will enable young Australians to access the site and its community via their mobile phone. Livewire on Wheels, a bedside access program, has already rolled out at Canberra Hospital and The Sydney Children’s Hospital at Randwick. Throughout 2009, the program will aim to target an additional seven hospitals right throughout Australia, including The Children’s Hospital at Westmead, John Hunter Hospital in Newcastle, Princess Margaret Hospital for Children in Perth, Mater Hospital in Brisbane, Royal Brisbane and Women’s Hospital, and Royal Children’s Hospital in Melbourne.

This will be followed by the creation of dedicated Livewire sites for both parents and siblings of young people with a serious illness, chronic health condition or disability, enabling them to share experiences with others who understand what they are going through, and a research program which examines the therapeutic benefits of Livewire services and the impacts of Internet use on members’ social and emotional well-being.

Any young Australian aged over 10 and under 21, who is currently living with a serious illness, chronic health condition or disability who wishes to join Livewire or find out more information should visit http://www.livewire.org.au or contact member.services@livewire.org.au.

----- End Release.

Great idea – I hope it really helps!

David.

Does the National Health And Hospital Reform Commission (NHHRC) Know What it is Talking About in e-Health?

I have been reflecting for the last couple of days on the NHHRC comments in the e-Health area.

To me what seems to be the core of what they have said we have:

“Finally, in our Interim Report we argue that creating a robust and integrated primary health care service will require the implementation of a person-controlled electronic personal health record. Across Australia’s range of community- and hospital-based health care settings the sharing of information is limited, fragmented or non-existent. This results in high dissatisfaction from patients, exasperation from clinicians, adverse events and sub-optimal care.

An electronic health record that can be accessed – with the person’s agreement – by all health professionals and across all settings is arguably the single most important enabler of truly person centred care. It is one of the most important systemic opportunities to improve the quality and safety of health care in Australia. We will explore the prerequisites and incentives to allow us to reach this goal in our final report.”

(See Page 8)

As previously noted the full report and broken down sections of the report are available from the NHHRC website.

Close reading of this suggests there is some confusion between two possible ways forward and that the thinking on the various options is, right now, quite muddied.

By “person-controlled electronic personal health record” I assume they are taking about an electronic health record for an individual that that individual has control and ownership of and which the individual decides who – and who not – is permitted access to the record. This seems to me to be describing a form of record as already offered (for free) by Microsoft Vault, Google Health and a host of smaller providers. This seems to be talking about a classic Personal Health Record (PHR).

While such records have now been available for a good few months there does not seem to be any information presently available on their use in Australia

It needs to be noted that the benefits profile and utility of PHRs is still to be clarified – although it makes intuitive sense there are situations where value will be easily demonstrable. What is seriously up for discussion at this time is just how the patient held and controlled record should interact with the clinician held ‘professional’ record.

However they then go on – in the same paragraph - to talk about the sharing of professional information between health care providers in hospitals and practices – somehow envisaging the person is also going to control this information as well. This is all very vague and muddy to me. This really conforms to no model I am aware of – except possibly in some UK practice management systems which can share information between the various clinicians associated with the practice while at the same time providing the patient with a view of the information held in the record on them as an individual. The record is controlled by the clinician but the patient has secure access to the same information.

In the next paragraph we have a description of what I would describe as a traditional Electronic Health Record (EHR) which is used by the clinician to manage and provide clinical care. It is this sort of record which has been evaluated so far in terms of making a positive difference to the quality and safety of patient care.

When the NHHRC says “We will explore the prerequisites and incentives to allow us to reach this goal in our final report.” I think there are a few things that it needs to do first – and given it has only five months until the final report it had better get going.

First it needs to assemble the evidence on what works and what does not work in the e-Health domain and how vital such technology is to health reform in general – taking into account overseas and local experience to date.

A useful source it might start from is found in my submission which can be found here:

http://www.nhhrc.org.au/internet/nhhrc/publishing.nsf/Content/113-moreassoc

Second it might like to consider the work done in the US on defining terms. If they see some value it might help discussions if they use language more precisely.

http://www.healthnewsdirect.com/?p=329

To the expert eye their words lack clarity and understanding at present.

Third it might then be an idea to define the strategic objectives and priorities the NHHRC has in the health record domain so that appropriate technical, security, privacy and so on architectures can be evolved and reviewed. Ultimately this work will inform what is delivered and what it will cost, as Government will certainly be keen to know!

I am sure NEHTA is keen to know if what the NHHRC is talking about is their IEHR of something different. If it is, it would be good if the NHHRC said so and defined how it envisaged it would work practically – given the dearth of detail so far from NEHTA.

This should then result in some sort of coherent set of suggestions as to what to do in this area.

To do this work the Commission will need some serious help, lots of it and soon!

Alternatively the Commission could review the Deloittes National e-Health Strategy developed a few months ago, conclude it is a useful way forward and endorse it (as Australian Health Ministers already have) as a way forward with any modifications it feels are vital after discussion with the authors and Booz who developed the NHHRC discussion paper on the issue.

The second approach is vastly to be preferred in my view, as it is not at all clear that if the Commission has not developed some clear, well articulated ideas by now, that it will in the next five months. Clarity and coherence of thought will be vital if any of these reforms are to succeed and e-Health will be a key enabler of that success.

David.

Personal Medical Devices are Linked to Personal Health Records

The following release appeared a few days ago.

IBM Teams With Google and Continua Health Alliance to Move Data From Remote Personal Medical Devices Into Google Health and Other PHRs

Efforts Expand the Content and Value of Personal Health Records

February 05, 2009: 12:01 AM ET

IBM (NYSE: IBM), in collaboration with Google and the Continua Health Alliance, today announced new software that will enable personal medical devices used for patient monitoring, screening and routine evaluation to automatically stream data results into a patient's Google Health Account or other personal health record (PHR). This breakthrough extends the value of PHRs to consumers and also helps to ensure that such records are current and accurate at all times. Once stored in a PHR, the data can also be shared with physicians and other members of the extended care network at a user's discretion.

Using IBM software to connect personal medical devices to Google Health and other health-record systems will allow patients to exchange vital health information with their doctors and other health services professionals more easily, and in real-time. As a result, health professionals can provide more timely feedback to patients on their conditions, suggest treatments, and help improve overall quality of life. In a world where chronic diseases like diabetes afflict more than 600 million(1), where more than one billion are overweight(2), and where the number of people older than 60 years will reach 1.2 billion by 2025(3), the IBM software solution can also help advance personalized healthcare.

For example, a busy mom can receive daily electronic updates on the health status of an aging parent who lives alone, is suffering from high blood pressure, and is on multiple medications. A traveling businessperson, who is diabetic and training for a marathon, can have a real-time discussion about her blood sugar levels and heart rate with her coach hundreds of miles away.

Google Health allows users to store, manage, and share their medical records and personal health information securely online. Google Health was officially launched last May, and is free to users and available online at www.google.com/health.

"Our partnership with IBM will help both providers and users gain access to their device data in a highly simplified and automated fashion," said Sameer Samat, Director for Google Health. "IBM has taken an important step in providing software that enables device manufacturers and hospitals to easily upload recorded data into a PHR platform, such as Google Health."

IBM integrated the capabilities of Information Management, Business Intelligence and the WebSphere Premises Server sensor event platform with Google Health. The new IBM solution will be able to:

· Support a wide variety of use cases, including chronic disease management, health and wellness, and elderly care, both in the United States as well as in countries and health-services enterprises around the world.

· Leverage the power of Services-Oriented Architectures, so that the partners can quickly build increasing volumes of flexible solutions for healthcare consumers and services providers based on modular components.

· Support the rapid growth of open standards through the power of the Continua Alliance, which is dedicated to enabling interoperable healthcare products and solutions.

· Support the development of solutions using the Google Health open platform.

"By harnessing the rapidly growing use of remote patient monitoring across every part of the healthcare services industry, our new IBM solution greatly increases the real-time value of PHRs for consumers everywhere," said Dan Pelino, General Manager, IBM Healthcare & Life Sciences Industry. "Open standards-based systems and technologies -- freely available to anyone interested in using them -- are key to fueling the development of systems that can share and exchange vital healthcare information on a timely basis, whenever and wherever it's needed."

IBM developed the software based on guidelines from Continua Health Alliance, a globally recognized organization dedicated to enabling interoperable personal healthcare products and solutions. It is also based in part on key open-source software available now from Eclipse and Open Health Tools, which are open-source communities dedicated to supporting advancements in healthcare.

"With close to a quarter of the world's population overweight, more than 600 million people with some form of chronic disease, and millions more reaching retirement age, the time for greater personal health management is now," said Dave Whitlinger, Continua Health Alliance President. "Continua member companies like IBM and Google are working on real solutions that will empower consumers and healthcare professionals to access and share information quickly and easily through connected products and solutions. Together, we can create a new marketplace, improve health and quality of life, and advance personal telehealth worldwide."

The technology behind this open, interoperable advance in PHR function was demonstrated successfully in October at the Partners Connected Health Symposium in Boston, MA, by IBM and Google, with the support of Continua Health Alliance.

(1) World Health Organization. (2005) Ten Facts About Chronic Disease

(2) World Health Organization. (2003). Obesity and Overweight: Dr. P. Puska, Dr. C. Nishida, Mr. D. Porter

(3) World Health Organization. (2006, February 13). The world is fast ageing - have we noticed?

About IBM:

For more information about IBM, please visit www.ibm.com.

The release is found here:

http://money.cnn.com/news/newsfeeds/articles/marketwire/0471635.htm

This is an important release in my view as it shows the work being done to have information flow on patient information flow directly into their PHRs so the information can then be assessed and acted upon. With the evidence strengthening as to the value and effectiveness of remote monitoring the implications for disease management programs seems to be enormous.

I predict a day a few years down the track when virtually all patients with chronic cardiovascular and respiratory disease, as well as diabetes, will be using devices of this type to assess and monitor their progress.

David.

Congress Approves Obama Giving Health IT more than $US20 Billion.

Well what can one say? The House and the Senate have decided and Health IT has become a national priority in the US. Of the $800 Billion in the package that is 2.5% of the whole plan.

The bills are ready for the President’s signature on Monday.

If Mr Rudd and Ms Roxon had a clue that would be $A1.05 B here on a proportional basis. That is more than enough to fund the first three years of implementation of the Deloittes National E-Health Strategy (with change!)

Details of the Health IT spend are found here:

Health IT funding spigot will open with stimulus bill

• By Nancy Ferris
• Feb 13, 2009

Congress was set today to pass a 1,071-page economic stimulus bill that includes more than $20 billion for health information technology and lays out new rules to protect the privacy of patients’ health information.

President Barack Obama has been urging Congress to act on the bill, and he is expected to sign it Feb. 16, if all goes as planned.

The bulk of the funding will go to Medicare and Medicaid providers — both individuals, such as doctors, and hospitals and other organizations — as substantial incentives to use e-medical records, beginning in 2011.The providers will be penalized if they do not adopt EMRs by 2014 or 2015.

The incentives are spelled out in technical language in a 63-page section of the bill. It appeared there had been few changes in the provisions that would give hospitals as much as $11 million and doctors between $44,000 and $64,000 for using e-medical records.

.....

Nearly one-tenth of the bill’s pages are devoted to health IT. Notable provisions include:

• Privacy rules under the Health Insurance Portability and Accountability Act of 1996 are strengthened, and their applicability is extended to more individuals and organizations that have access to patients’ health records.
• ONC is required to appoint a chief privacy officer to advise the national coordinator on privacy and security issues.
• New health IT policy and standards committees would be established as federal advisory committees.
• Although the bill sets a goal of having e-health records for every American by 2014, the bill specifies that patients are not required to have EHRs.
• Health care providers and insurers that contract with the federal government must use standards-compliant health IT systems and products.
• The National Institute of Standards and Technology would test health IT standards.
• Organizations and individuals that have patients’ health records would be required to report breaches of that data.
• Sales of health records would be restricted largely, making the data available to researchers and public health authorities but few others.
• In a controversial provision that persisted into the final bill, state attorneys general could sue individuals to enforce HIPAA privacy and security standards.

The full article is found here:

http://govhealthit.com/articles/2009/02/13/health-it-funding-stimulus-bill.aspx

There is a staggering amount of commentary and discussion on all this.

The best I can do is suggest you use the following link and browse until you get tired of it!

http://www.google.com/news?hl=en&ned=us&q=%22Health+IT%22+%22stimulus+package%22&btnG=Search+News

A slightly different set of articles is found using this:

http://www.google.com/news?hl=en&ned=us&nolr=1&q=%22e-Health%22+%22stimulus+package%22&btnG=Search

The range of views is really diverse –as is the pathetic scare campaign being run by a Republican rump.

What is quite interesting – and relevant in OZ – is the key role Health IT is seen as playing in the overall Obama health reform agenda. It gets most of the Health spend it would seem.

Obama team sees stimulus advancing health reform

By KEVIN FREKING –

WASHINGTON (AP) — The Obama administration is using the economic stimulus package to show it has made serious progress on the president's health agenda, perhaps softening the blow if Congress fails to comprehensively address the issue this year.

In the legislation passed late Friday, Congress approved spending about $19 billion over the coming years on electronic health records and an additional $1.1 billion on research comparing which treatments work best for a particular disease.

Also, the bill sets aside about $1 billion for a "prevention and wellness fund." About $300 million of that money would provide additional immunizations. Most of the rest of that money will go to state and communities to help them tackle smoking, obesity and various preventable health problems.

"This represents the beginning steps of the president's health reform vision," said Jenny Backus, a spokeswoman for the Health and Human Services Department. "It's designed to get relief to people who need it most and to do everything we can to bring down the cost of health care, and improve access and quality."

Some Republicans took exception to that vision on Friday. They focused their criticism on a new federal council that will coordinate what's called comparative-effectiveness research — when doctors and statisticians sift medical records to determine which treatments work best for a particular disease.

The government already spends hundreds of millions of dollars on such research. Democrats will greatly boost that spending, but they also establish a 15-member council whose members will annually report on the state of comparative effectiveness research and make recommendations.

Republican lawmakers claim the council will become a "government rationing board" that will make life-and-death decisions about which treatments doctors will be able to use.

"Congressional Democrats are using the cover of an economic crisis to advance an agenda that will destroy the doctor-patient relationship and set us on a course for government-administered health care," said Rep. Tom Price, R-Ga., a doctor.

Drug makers and medical-device manufacturers are wary that the council would cut demand for some of their products if they are found not to be any more effective than cheaper alternatives. They fear any recommendation made could be used by Medicare to say it won't pay for a particular treatment, a decision that likely would be echoed by private insurers.

"The goal of this board is to conduct research that will allow the federal government to deny needed health care," said Rep. Wally Herger, R-Calif.

More here:

http://www.google.com/hostednews/ap/article/ALeqM5i5l6XyoVxqyli-VkTOiQHJJPyiCwD96B8LIG0

Well – we will have to wait and see what the NHHRC will recommend in June - given it likes the idea of Health IT but needs more time to figure out the detail!

David.

National Health and Hospital Reform Commission. Interim Report Feb 16 2009

In this blog our focus is in the e-Health domain. Others can address the rest of the report.

First to note the report is available from the NHHRC website.

Under the third key element of the proposals called:

Connecting care: comprehensive care for people over their lifetime

And under the subheading:

Creating strong primary health care services for everyone

We find the following. (Page 8)

“Finally, in our Interim Report we argue that creating a robust and integrated primary health care service will require the implementation of a person-controlled electronic personal health record. Across Australia’s range of community- and hospital-based health care settings the sharing of information is limited, fragmented or non-existent. This results in high dissatisfaction from patients, exasperation from clinicians, adverse events and sub-optimal care.

An electronic health record that can be accessed – with the person’s agreement – by all health professionals and across all settings is arguably the single most important enabler of truly person centred care. It is one of the most important systemic opportunities to improve the quality and safety of health care in Australia. We will explore the prerequisites and incentives to allow us to reach this goal in our final report.”

Under the subheading:

Restoring people to better health and independent living

Under this we don’t seem to have anything on Telehealth

Under the heading:

Facing inequities: recognise and tackle the causes and impacts of health inequities

And the subheading:

Delivering better health outcomes for remote and rural communities

We have the following (Page 16):

“Here we highlight two:

• Telehealth and telemedicine are used in Australia as an avenue for bringing health care to people in remote and rural areas, but they are not being used to their full potential. With limited exceptions, current Medicare arrangements require that the patient be present for a consultation and that only one provider can bill for a service with the same patient at the same time. Under these arrangements, if a telehealth consultation with a metropolitan specialist is arranged and the rural specialist or general practitioner accompanies the patient, only one of the doctors can bill for this service. These outmoded funding arrangements need to be changed.

• All state and territory governments provide a patient travel and accommodation assistance scheme to help people in remote and rural areas to access specialist medical appointments and treatment. But there are significant differences among the jurisdictions in eligibility and operation. We propose that a patient travel and accommodation assistance scheme be funded at a level that takes better account of the out-of-pocket costs of patients and their families and facilitates timely treatment and care.”

Interestingly, in the Next Steps section we find the following (Page 27):

“Some of our proposals are less advanced than others. Our work in the key areas of e-health and workforce, for example, needs further development for our final report. In other reform areas we have presented options, seeking discussion of possible approaches.”

Under the major section:

Reform Directions

We find:

2.9 We support the development of a person-controlled electronic personal health record. We will explore the prerequisites and incentives to allow us to reach this goal in our final report.

And:

4.6 T o improve quality, data on quality and safety should be collated, compared and provided back to hospitals, clinical units and clinicians in a timely fashion to expedite quality and quality improvement cycles. Hospitals should also be required to report on their strategies to improve safety and quality of care and actions taken in response to identified safety issues. (Pages 31 and 33)

And:

5.6 We recognise the vital role of equipment, aids and other devices, in helping people to improve health functioning and to live as independently as possible in the community. Ensuring affordable access to such equipment will be considered under reform direction 13.4 that foreshadows further work on the development of integrated safety nets. (Page 34)

Finally we see right at the end of the introductory papers:

“This is an Interim Report and remains a work in progress. We recognise that we are further advanced in some areas of focus than others. Our work in the key areas of e-health and workforce, for example, will be further developed in our final report. We are also yet to fully explore the opportunities and challenges that new technologies may present, and their influence on health care and our world in the future. In some instances, we have presented options and our work to date will benefit from further discussion.” (Page 45)

The ideas summarised above are further developed in Pages 99-100.

On Page 350 we also find:

“The call for better data linkages would of course be unnecessary if all patients had an electronic information record which could be readily ‘mined’ for information on diagnoses, care pathways, treatment and health outcomes. The plea to ‘get going’ with electronic, patient-centred information records, as a rich source of research information and as a pivot for better coordination of safe and high quality care, was heard loud and long:

And my completely earth shattering idea is not very surprisingly the speedy and effective deployment of electronic health records into the community. So that we can start reaping the benefits of the measurement of health outcomes and the efficiencies the workforce would enjoy from being able to message each other instead of having to send pieces of paper round and download x-rays instead of having patients sitting around and all that sort of stuff.40

Our health system really is centred not on patients or individuals, it’s centred around the practitioners and the providers, and that’s just the way it’s evolved historically. So we really don’t have a patient-centred system. So it’s a huge change to get a system to turn around to be focused on the consumer. I think that means that, for instance, a patient-centred system would mean that we should have a patient-centred information record, so that each person can know that there is a record that contains all of the things that are related to their health, and they’re all brought together electronically in the one place, so every person with an interest in their health can access it. So a GP’s interventions, a speech therapist’s work, a medical specialist of one kind or another, a home care worker, could all see the whole story of what’s going on in the person’s life. And we just don’t have that. At the moment, every practitioner keeps their own records in their own filing cabinet, and no-one else can see them. No collaboration can take place – hopeless.41

The complex and controversial subject of e-health, personal health records and information management is one which we have chosen to defer for further exploration in our final report. The vast number of options suggested to expedite a patient-centred electronic record, and leverage the investment required to roll-out and sustain it in practice, require further deliberation.“

So what do we have here? A few general reactions are as follows.

First there is no mention or citation I can find of the Deloittes National E-Health Strategy. This has the left and right hand being clueless about the other feel to it. And why no comment on their implementation roadmap?

Second e-Health seems to have been just too hard – and so consideration has been largely deferred until the final report – due in about six months. One really wonders what they hope to learn in that period having already being operating for 12 months or so.

Third there is just no clarity at all about what a ‘Personal Health Record’ is and absolutely no pathway described as to how we might get there if we think it is a good idea. It is odd they talk about the need for information flows and linkages but then fail to say we get this happening so the PHR can be then evolved a little later.

Fourth one wonders what is behind use of the phrase “The complex and controversial subject of e-health, personal health records and information management”. Is this reflecting a bureaucratic mindset that does quite ‘get it’ or is afraid of it given the stuff ups to date? Complex I agree – controversial – well not really in the rest of the world.

Fifth it is not clear that the Commission recognises how many of its ambitions will be frustrated without an improved e-health infrastructure. “Connected health” is just a phrase without a real e-health upgrade.

Sixth there is a worrying feel that the NHHRC is going to have a go at developing another e-Health Strategy and set of recommendations. That will mean we will potentially have NEHTA, Deloittes and the NHHRC all heading in non-coordinated directions. A prescription for policy paralysis if ever there was one.

Seventh one wonders if deferring consideration of e-health reflects a view as to the importance of the area – and its key role in Health Reform. Hardly what national leaders in the rest of the world believe as far as I can tell.

There is some useful work in this report. However as far as e-Health is concerned it is really pretty hopeless. In summary the NHHRC is saying “we think this might be important but we can’t get out head around it!” Pretty sad really.

David.

Report Watch – Week of 9th February, 2009

Just an occasional post when I come upon a few interesting reports that are worth a download. This week we have a few.

First we have:

New Best Practice Report on Post Implementation Released

MTC/NEHI engaged CSC (formerly the First Consulting Group) to conduct a national survey of hospitals facing the operational challenges of newly implemented CPOE systems. The specific issues that are covered include:

• Ongoing Support
• Optimizing CPOE
• Ongoing Management of Order Sets and CDS
• CPOE and Medication Reconciliation
• Downtime Procedures

The report includes a combination of onsite and telephone interviews with community hospitals that have a large number of physicians using CPOE. The report will be released in early February and distributed to all Massachusetts hospitals and available on our website at www.masstech.org/ehealth.

Access the full report is here:

http://web3.streamhoster.com/mtc/cpoe2009.pdf

This is a useful review of lessons learnt on the operational issues faced in CPOE Implementation. Very useful indeed.

Second we have:

PHRs are operating systems

Posted by Dana Blankenhorn @ 9:07 am

User Centric has a white paper out comparing the usability of Google Health and Microsoft HealthVault. (Picture from Tecni-Blog, a Spanish-language tech blog.)

The news is not good. Both rated poorly in terms of user experience. User Centric has followed up with a set of recommendations.

It occurs to me all this misses a rather important point, namely that Personal Health Record software is not really an application.

It’s more like an operating system.

A PHR has to do many different things for many people. It must be able to take in data cleanly and seamlessly, sometimes automatically. That requires interfaces with hospital records, and with a host of consumer devices. It may also require taking input from alternative therapists, like chiropractors.

Full article here:

http://healthcare.zdnet.com/?p=1742

The paper, "How to Select an Electronic Health Record System the Healthcare Professionals Can Use," is available at usercentric.com.

Third we have:

AHIMA Calls for Data Stewardship

February 3, 2009

The American Health Information Management Association is calling for establishment of a National Health Data Stewardship Entity. Supporting the exchange of health information, the entity would promote standards for uniform and consistent data.

"This NHDSE would coordinate the bodies that support the life cycle and collection of data exchanged over electronic and other health information exchange systems and the data stored in a variety of repositories or registries," according to a statement from Chicago-based AHIMA.

.....

More here:

http://www.healthdatamanagement.com/news/standards27667-1.html?ET=healthdatamanagement:e754:100325a:&st=email&channel=information_exchange

For the complete AHIMA statement, which covers principals and guidelines; data access, use and control; and recommendations, click here.

A useful working document that should help consideration of similar matters here in OZ.

Fourth we have:

Ontario’s eHealth Strategy

On February 5, 2009, eHealth Ontario published Ontario’s three year eHealth Strategy. It is a working draft created by eHealth Ontario’s leadership and Board of Directors with input from the healthcare sector.

From February 5-19, we invite you to provide feedback to the Strategy, which will be used to finalize the plan that will:

• Guide investments and operations during the Strategy time frame of 2009-2012
• Enable/fulfill the government’s strategic healthcare priorities
• Provide a framework for measuring and reporting progress and results

More here:

http://www.ehealthontario.on.ca/news/strategy_consultation.asp

Download the Draft Strategy here:

http://www.ehealthontario.on.ca/pdfs/News/Ontario_eHealthStrategy.pdf

A very useful document – note the similarity to many aspect of the Deloittes Strategy. The lessons learnt section – pages 6-10 – is well done and spot on!

Fifth we have:

Call for co-ordination on ID card security

04 Feb 2009

ENISA, the EU agency and responsible for assessing Europe’s digital security, has published a position paper highlighting problems with current and planned European electronic ID card schemes.

ENISA (The European Network and Information Security Agency), based in Heraklion, Crete, describes itself as Europe’s centre of expertise for information security, with the mission of ‘defending the future’. The centre operates as a hub for exchange of information and best practices in the field of Information Security.

The new EHISA paper gives the first overview of the differences between privacy features in eID cards across Europe.

There are currently ten national electronic ID card schemes already in use across the EU, with thirteen more in the pipeline.

Electronic ID cards and health smart cards form a key part of the e-health initiatives in European countries including Germany, Austria and France.

More here:

http://www.ehealtheurope.net/news/4541/call_for_co-ordination_on_id_card_security

The report can be found here:

www.enisa.europa.eu/doc/pdf/deliverables/enisa_privacy_features_eID.pdf

It is useful to have a discussion of card security and privacy protection for these cards given the level of penetration of these cards around the world.

Sixth we have:

HIPAA Privacy Rule Fails to Adequately Protect Patient Privacy and Hampers

Health Research; A New Approach to Privacy Protection Is Needed in Research

WASHINGTON -- The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule does not adequately protect the privacy of people's personal health information and hinders important health research discoveries, concludes a new report from the Institute of Medicine.

Congress should authorize the development of an entirely new approach to protecting personal health information in research, separate from the HIPAA Privacy Rule, said the committee that wrote the report. This new approach should apply privacy, data security, and accountability standards uniformly to information used in all health-related research regardless of who funds or conducts the research.

If policymakers decide to continue relying on the current rule to protect privacy in health research, the committee recommends a series of changes to improve the rule and the guidance that the U.S. Department of Health and Human Services (HHS) gives on how to comply with it.

In addition, the report urges all institutions conducting health research to strengthen their data protection. Security breaches are a growing problem for health information databases. Among the measures that should be taken, encryption should be required for all laptops, flash drives, and other portable media containing such data given the potential for these items to be lost or stolen.

The committee's recommendations recognize the valuable societal benefits that both ethically conducted health research and privacy protections provide. Without such research, society would lose the benefit of new therapies, improved diagnostics, and more effective ways to prevent illness and deliver care. Privacy helps protect individuals from harm, such as discrimination and identity theft, and permits research and public health activities to be carried out in ways that preserve their dignity.

"We believe there is synergy between the goals of safeguarding privacy and enhancing health research and that it is critically important to our nation's health to strengthen privacy protections and still facilitate research," said committee chair Lawrence O. Gostin, professor of law and director, O'Neill Institute for National and Global Health Law, Georgetown University Law Center, Washington, D.C. "Our recommendations aim to boost regulations and practices that effectively protect personally identifiable health information, while changing provisions of the HIPAA Privacy Rule or its interpretations that have proved to be ineffective."

The HIPAA Privacy Rule regulates what uses and disclosures of personally identifiable health information are permitted by health plans, health care providers, and other entities covered by the regulation. The goal is to ensure that individuals' health information is properly protected while allowing the flow of data needed to promote high-quality health care and health-related research.

However, the HIPAA Privacy Rule is difficult to reconcile with other federal regulations governing research involving people and their personally identifiable information. Moreover, organizations that collect and use health data vary greatly in how they interpret and follow the rule, and the rule does not apply uniformly to all health research. The committee's review of published reports, testimony from patient and privacy advocates and the health research community, and other sources of information led it to conclude that the way the rule is currently interpreted does not adequately protect privacy and impedes important health research.

HHS and other federal agencies should develop a new approach to regulation that focuses on best practices in privacy, security, and transparency, the report says. The new framework should facilitate use of health data in which personally identifiable information is removed and should provide legal sanctions against unauthorized re-identification of individuals. It should provide ethical oversight of research in which use of personally identifiable information without individual consent is necessary. This oversight could be accomplished by local ethical review boards that assess proposed projects on a case-by-case basis, or institutions could be certified at the federal level to carry out this kind of research, having proved they have policies and practices in place to protect data privacy and ensure security.

If the current HIPAA Privacy Rule continues to be the means for safeguarding privacy in health-related research, the committee recommended several ways to revise the rule and its guidance on compliance. For example, HHS should make it clear that people can grant permission in advance that samples or data collected from them for one research project can be used in future research. And the agency should simplify and clarify the criteria for making decisions about waiving requirements to obtain permission from every patient whose personal health information will be used in study.

The study was sponsored by the U.S. Department of Health and Human Services, Robert Wood Johnson Foundation, American Cancer Society, American Heart Association/American Stroke Association, American Society for Clinical Oncology, Burroughs Wellcome Fund, and C-Change. Established in 1970 under the charter of the National Academy of Sciences, the Institute of Medicine provides independent, objective, evidence-based advice to policymakers, health professionals, the private sector, and the public. The National Academy of Sciences, National Academy of Engineering, Institute of Medicine, and National Research Council make up the National Academies. A committee roster follows.

Pre-publication copies of Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research are available from the National Academies Press; tel. 202-334-3313 or 1-800-624-6242 or on the Internet at http://www.nap.edu. Additional information on the report can be found at http://www.iom.edu/hipaa. Reporters may obtain a copy from the Office of News and Public Information (contacts listed above).

More here:

http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=12458

The report information is found here:

http://www.nap.edu/catalog.php?record_id=12458

A free summary of the 300 page report is found here:

http://www.iom.edu/Object.File/Master/61/836/HIPAA%20report%20brief%20FINAL.pdf

Well worth a browse.

Last we have a useful link to a range of EU Reports on e-Health.

This page will get you started.

http://ec.europa.eu/information_society/activities/health/downloads/index_en.htm

All sorts of interesting material to browse.

Here is a list of the most recent

2009-02 Study report eHealth in Action - Good Practice in European Countries

2009-01 Project report Semantic Interoperability for Better Health and Safer Healthcare

2008-12 Study Robotics for Healthcare report and Robotics for Healthcare leaflet

2008-12 Conference ICT-BIO 2008 Report

2008-12 Conference WHIT2008 EC Procurement workshop report

2008-11 Communication Telemedicine for the benefit of patient, healthcare systems and society

All these reports and associated materials are worth a close look.

David.

Useful and Interesting Health IT Links from the Last Week – 15/02/2009.

Again, in the last week, I have come across a few news items which are worth passing on.

First we have:

E-health projects sick without govt aid

But experts say electronic records on track in NSW, VIC.

Darren Pauli 12/02/2009 14:31:00

Health professionals have slammed Australian governments for a lacklustre investment in e-health, claiming the nation has slipped behind many countries in the field because of weak funding and unresponsive departments.

Experts said a $218 million national fund allocation to the National E-Health Transition Authority (NEHTA) over three years to June 2012 should be increased to bolster what they say is an ailing e-health industry. The grants will be used for the SNOMED Clinical Terminology project, a national e-health identification system for individuals and providers, and to develop a user-authentication scheme for the health care sector.

Speaking at an e-health summit in Sydney last week, University of NSW Professor Branko Cellar said government health departments have ignored workable e-health technologies in favour of existing solutions to mitigate risk and accountability.

“A recent premier came to visit and was impressed by [telehealth] technology but even though [he] may want it, no one in the health department was incentivised to take it on because their seats are more carefully retained if they do more of the same — they see disruptive technology as too risky,” Cellar said.

“Australia was a world leader but now we need to start catching up with the rest of the world… There is no policy for [telehealth] in Australia and the government has never ran a clear trial of the technology.”

Cellar, a long term advocate of remote care and head of the Biomedical Systems Laboratory at the university, said the potential for telehealth to reduce time spent in areas like chronic disease management, which itself occupies more than 75 percent of clinicians time, is “manna from heaven”.

More here:

http://www.computerworld.com.au/article/276474/e-health_projects_sick_without_govt_aid?eid=-6787

These paragraphs especially caught my eye.

“Ascribe Asia Pacific chief executive Bryn Evans took a different perspective and played down concerns over Australia’s e-health policy and direction.

He told Computerworld Australia has solid investments in e-health, found in NSW Health’s electronic Medical Record (eMR) and Victoria’s HealthSmart projects, but conceded the industry needs more government funding.

“The two largest states in Australia, NSW Health with its eMR Project and Victoria with its HealthSmart Program, are absolutely doing the right thing, and are developing and implementing a standard electronic medical record on a state-wide basis. It will mean that wherever a patient is treated in the state, their patient details, medical history, test results, treatment notes etc will be fully up to date and instantly available to any clinician attending to that patient,” Evans said.”

I wonder does Mr Evans know something the rest of us don’t to be sure NSW and Victoria are going so well. Sure there have been some successes but it has taken over 10 years in NSW to get to even this stage of partial implementation. Hardly impressive in my view. He is certainly right that this work is underfunded. I would also contend it has been badly managed - as Mr Garling pointed out – along with many other aspects of NSW Health.

I am sure Prof Cellar would be happy about this!

http://www.cabinet.qld.gov.au/mms/StatementDisplaySingle.aspx?id=62555

Minister for Health
The Honourable Stephen Robertson

Wednesday, February 04, 2009

Telehealth project boosts home-based care for Ipswich patients

Ipswich patients are benefiting from specialist appointments and consultations in their own homes under a new Telehealth program launched today by Health Minister Stephen Robertson.

Mr Robertson launched the Tunstall Telehealth Lifestyle Coordination (TLC) Project with State Member for Ipswich West Wayne Wendt and State Member for Ipswich Rachel Nolan.

“World-wide environmental factors, including an ageing population and staff shortages, are placing enormous pressure on health systems to deliver more for less,” Mr Robertson said.

“This project shows how health service providers and the community are using innovative approaches to rise to these challenges.

“The Tunstall TLC Project is a home monitoring Telehealth system which allows the patient to capture their vital signs and have the data monitored by the appropriate specialist.

“The benefit of Telehealth services lies in removing physical and social distances between health professionals and patients without affecting the quality of care provided.”

Second we have:

ID demand: Centrelink apology

Sid Maher | February 13, 2009

CENTRELINK will be forced to apologise to more than 1500 Victorian bushfire and north Queensland flood victims after letters demanding they provide identification were automatically mailed out by computer.

Kevin Rudd on Wednesday promised Victorian bushfire victims they would receive emergency Centrelink payments even if they had lost all their identification in the inferno.

But it was discovered yesterday that some victims of the Victorian bushfires and the north Queensland floods who had obtained payments had been sent a letter demanding proof of identity as part of an automatic letter dispatch generated by a computer.

Human Services Minister Joe Ludwig yesterday ordered the letters to be halted and Centrelink to individually apologise to bushfire victims who had received the letters and tell them to disregard its demand for proof of identity.

There were 1778 letters printed for the fire and flood victims, but 239 of these generated yesterday were stopped. However, 648 were sent out on Monday, 551 were sent on Tuesday and a further 340 were sent on Wednesday.

Senator Ludwig described the sending out of the letter as "highly insensitive" and said "it should not have been done".

He urged victims to "throw this letter in the bin when they receive it".

More here:

http://www.australianit.news.com.au/story/0,24897,25048433-15306,00.html

This sort of disaster reminds us just how important it will be to plan properly for disaster with systems like the NEHTA Health Identifier – to make sure individuals information is accessible when it may be most needed. (Hurricane Katrina and the response provide some useful lessons on what can be done.)

See here:

http://govhealthit.com/Articles/2005/09/Leavitt-Katrina-demonstrates-need-for-ehealth-records.aspx

and here:

http://www.okjolt.org/pdf/2007okjoltrev38.pdf

and here:

http://www.computerworld.com/action/article.do?command=viewArticleBasic&articleId=9063839

“Mayer said in October, when Google first began laying out its plan for online records, that the company became interested in entering the personal health records (PHR) business when Hurricane Katrina hit the Gulf Coast and countless paper-based medical records were lost in the aftermath of the storm.”

Third we have:

http://www.nehta.gov.au/nehta-news/474-release-ensures-patients-get-exactly-what-the-doctor-ordered

Release ensures patients get exactly what the doctor ordered

February 9, 2009. The National E-Health Transition Authority (NEHTA) has released documentation and reference sets for dosage terminology which will underpin a future electronic prescribing service.

Electronic prescribing will ensure patients receive a prescribed medicine in the right dose, at the right time, on each occasion they fill a prescription.

“Handwritten prescriptions can be misinterpreted and patients’ safety can be put at risk if abbreviations or dosage instructions are not clearly understood by a nurse or pharmacist. Dosage Terminology will ensure consistency in understanding the dosage term,” said Peter Fleming, NEHTA Chief Executive.

In the future, prescriptions will be sent electronically, removing the need for the pharmacist to interpret difficult to read handwriting or confusing abbreviations. The prescription data will also be incorporated with SNOMED CT, the internationally pre-eminent clinical terminology that has been identified by NEHTA as the preferred terminology for Australia.

The document for release details NEHTA’s approach to dosage terminology. The Dosage Approach document also describes the Dosage Terminology reference sets and the guiding principles used in the creation and development of the Dosage Reference Sets.

More here:

This is good news – as it seems we are slowly getting some progress in this area. Pity it has taken so long!

Fourth we have:

Patient safety compromised by severe IT outages

10 February 2009 03:00PM

A third of healthcare and IT professionals say patient safety was compromised by a severe outage of administration or clinical systems in the past year, a survey found.

The survey of 83 professionals at the Health Informatics Conference in Melbourne also found the average length of a severe outage was 4.1 hours, although most lasted less than an hour.

Most of those surveyed reported performance issues, including lack of availability, on the day their organisations deployed their most recent healthcare application.

iSoft/IBA was the most common healthcare information system deployed by respondents.

"Healthcare information systems are expected to play a central role in improving healthcare outcomes and reducing costs, yet many Australian healthcare organisations lack the basic tools to ensure their major IT applications can be relied upon to deliver 24 hours a day, 365 days a year," said Craig Little, vice-president of sales operations for APJ at Compuware.

More here:

http://www.itnews.com.au/News/96032,patient-safety-compromised-by-severe-it-outages.aspx

While you can be sure the commissioners of the survey are trying to see something – like continuity services – the message is a reasonable one. I have to say, however, the degree and timing of outages is hardly surprise. I am pretty sure most new deployments cause some disruption till they are bedded down!

Fifth we have:

Parkinson's suffers embracing Wii

Danny Rose, Medical Writer

February 11, 2009 - 7:59AM

Parkinson's disease sufferers who play computer games have "fun", says an Australian professor who now wants to see whether they can also improve how sure they are on their feet.

A group of seven older people with and without the degenerative condition took part in a NSW pilot project, and they were put through an almost daily regime of playing the Nintendo Wii.

The home entertainment device is controlled through arm movements, while a Wii Fit "board" was also added requiring the seated users to interact with on-screen objects using their feet.

Southern Cross University Associate Professor Rick van der Zwan said the initial findings were positive, as it showed the older people were prepared to embrace an unfamiliar technology.

"Lots of older people when you talk to them about computer games they think about shooting up spaceships ... they're not so interested," Dr van der Zwan says.

More here:

http://news.smh.com.au/breaking-news-national/parkinsons-suffers-embracing-wii-20090211-83t9.html

Good to see the Nintendo is really making a difference!

Sixth we have:

Thieves take doctor's laptop and research

10.02.2009

by Simon Wood

A Wanganui surgeon is willing to post a $500 reward for the return of his laptop computer, which contains vital patient data he has been accumulating over recent months.

Alan Hearn is a general surgeon at Wanganui Hospital, and he and his family are renting a home in Longbeach Dr, Castecliff.

At some time during the night of February 5-6, their home was burgled and Mr Hearn's black Toshiba laptop and a red Western digital external hard drive were stolen.

"I know it's a long shot, but the computer is a bit distinctive. It's a high-gloss black with no silver markings and has Harman Kardon speakers built in," he said.

Also missing is a UK power lead.

Sadly, not all that data was backed up, and that means if Mr Hearn doesn't get the laptop back, a study he planned to publish will come to nothing and he will have to start again.

Mr Hearn specialises in colo-rectal surgery, and his study focused on patients he had been dealing with.

It looked at whether or not pre-operative radiotherapy before bowel cancer surgery was benefiting them in the long term.

"There's a lot of stuff on the laptop, including some family photos as well as that patient data.

"But if I don't get it back, I've lost all that data on local patients.

"It means we can't publish those outcomes."

"The back-up I had was a portable hard drive, and that was on the desk. That went as well," he said.

More here:

http://www.wanganuichronicle.co.nz/localnews/storydisplay.cfm?storyid=3794748&thesection=localnews&thesubsection=&thesecondsubsection=

Oh dear, oh dear. At the very least it makes one keen to have an offsite backup of critical data. Keeping the portable hard disk backup separate from the laptop – and preferably hidden – would make good sense – after the event!

Last a slightly more technical article:

Debate IT: What role can technology play in times of natural disasters?

Can technology be more effectively utilised to help prevent loss during times of extreme circumstances like bushfires and floods.

Computerworld Staff 13/02/2009 14:40:00

Australia's emergency communication systems have been called into question following the devastating bushfires that tore through much of Victoria last week, killing at least 181 people.

Thousands of Victorian customers were cut-off from telephone and Internet services after the blazes melted tens of millions of dollars worth of Telstra telecommunication infrastructure.

The telco lost some 2800 fixed phone lines, 2100 ADSL Internet connections and 47 ISDN phone lines, while eight Next G network and six GSM mobile towers were knocked offline.

Red Cross State Inquiry Centres were overrun by distressed callers seeking information on friends and family, prompting one outsourcer to donate a 40-seat call centre to handle overflow.

Firefighters have laid some blame on stalled upgrades to the nation's emergency communications system, which they say has remained dormant for years.

On the back of pledges to improve national emergency communications by Australia's political leaders, including PM Kevin Rudd, Computerworld asks its readers, what role should technology play to avert future natural disasters? What are some of the ideas brewing in your mind that could come in handy during a natural disaster and which can help save lives, wildlife and property?

More here:

http://www.computerworld.com.au/article/276651/debate_it_what_role_can_technology_play_times_natural_disasters?fp=16&fpid=1

In the context of the fires in Victoria and floods in Qld this seems like a useful discussion. Follow on the site. Condolences to all who have suffered in this awful period.

More next week.

David.

Major Release Alert for Monday 16 February 2009.

Just a short note to alert interested parties that the National Health and Hospitals Reform Commission due to release its interim report on Monday!

Presumably the report will be available here:

http://www.nhhrc.org.au/internet/nhhrc/publishing.nsf/Content/home-1

This has been a long and complex process and it will be interesting to see what comes from it, especially in the area of e-Health.

The commission's report will be released by commission chairwoman Christine Bennett at the National Press Club in Canberra on Monday.

The excitement / hope builds! (Or maybe I am just a hopeless optimist)

David.