HISA Comments on the Law Reform Commission Report – Especially on Health Information Privacy.

The following was released today (12 August, 2008)

MEDIA PRESS RELEASE – For immediate release.

“Australia Health Informatics Society ready to tackle the New Privacy laws”

The Health Informatics Society of Australia (HISA) welcomes the release yesterday of the report that recommends review of our outdated Privacy laws.

The Australian Law Reform Commission has produced nearly 3000 page report over three volumes that address the need to update Australia’s complex Privacy laws originally drafted 20 years ago. Predating the modern Internet and having no concept of many of today’s technology such as the now widely used RFID wireless chips commonly found on consumer products; the existing laws allow for misinterpretation compounded by the fact that State and Federal plus the Public and Private sectors all differ.

“Now we are entering the age of the ubiquitous Electronic Health Records the need to address this is of paramount importance” said HISA’s President, Dr Michael Legg.

Dr Peter Croll, the chair of HISA Health Privacy forum said that “Many lives can be saved, for example, through the introduction of RFID chip on pharmaceutical products but we need the protection through legislation that embraces these new technologies.”

The proposed changes to the Privacy Law are intentionally generic. The president of the ALRC, Professor David Weisbrot, states that “Although the federal Privacy Act is only 20 years old, it was introduced before the advent of supercomputers, the Internet, mobile phones, digital cameras, e-commerce, sophisticated surveillance devices and social networking websites—all of which challenge our capacity to safeguard our sensitive personal information.”

Although digital cameras, mobile phones and social networking are examples of what the public relates to, this is not the key areas of concern for health related data.

“Health information requires special treatment” says Dr Croll “Unlike financial record you cannot undo the harm from inappropriately releasing sensitive information” this needs to be understood since “bank records can be put right and any inconveniences compensated for but you can’t unlearn something you find out about a person who has a mental history or a sexual infection”.

This is why HISA has advocated for health information to be given special treatment and welcomes the recent media statement: “The ALRC recommends the drafting of new Privacy (Health Information) Regulations to regulate this important field. Recommendations also are made to deal with electronic health records, and the greater facilitation of health and medical research.”

How these regulations will be drafted has yet to be agreed. HISA is concerned that without suitable input from the public and heathcare professionals we might end up going nowhere as with the Health and Social Services Access card that was scrapped by the previous government. Failure to address privacy concerns was a major contributing factor.

Dr Croll said that “It is imperative that we from a consensus on such sensitive issues and get the balance right between what will protect the individual and yet allow for advancement of medical knowledge for the public good through access to quality health data.”

HISA has taken a lead role in addressing this by launching the inaugural ‘Health Privacy Futures’ conference HPF’08, to be held in Brisbane 10-11 Nov. 2008. Dr Brendan Lovelock, CEO of HISA, said: “HPF will bring together key stakeholders in Health privacy which is considered a key foundation of Australia’s transition to a safer and more efficient health system. This conference looks to bring together healthcare providers, consumers and Australia’s leading privacy experts, to bring clarity and definition to this critical issue.”

For more information on HPF’08 and the role that professionals can provide for the advancement of health informatics, please visit www.hisa.org.au.

----- End Release.

It is good to see HISA is being pro-active in this complex and difficult area. We need much more thought given to all this – unmediated in my view – from the pressure applied by entities like NEHTA to have their views prevail. Real public consultation is what is needed here to have e-Health succeed.

David.

Great News for General Practice in Queensland!

The following press release arrived today

MEDIA RELEASE

11 August 2008

iHealth Care - a shot in the arm for better patient information transfer

General Practice Queensland is set to roll out a new medical contact directory and messaging service that will save practitioners time and money while ultimately improving patient care.

The iHealth Care Directory will provide registered participants with free access to a comprehensive listing of GPs, specialists, allied health professionals, pharmacies and aged care facilities.

Using the highly secure messaging service provided by Medical-Objects, iHealth Care will also allow users to share relevant patient information electronically.

According to General Practice Queensland Board Chair, Dr John Kastrissios, the two new services will eliminate the need for traditional mail and facsimiles, improving the timeliness and accuracy of communication between practitioners.

“iHealth Care will dramatically increase the speed of communication between practitioners, providing virtually instantaneous access to information such as test results and other patient-specific data. This, in turn, will significantly reduce the amount of admin time spent at surgeries,” Dr Kastrissios said.

“The Directory allows doctors to search for and refer patients to the most appropriate service providers, while the secure messaging system will facilitate better communication between Queensland’s public and private hospitals, doctors, pharmacists, allied health professionals and aged care facilities.

“This is good news for patients. A better, more secure information and communication service across the State’s health sector will deliver more seamless care, so patients won’t have to endure the frustration and expense of attending consultations when test results haven’t arrived or clinical information is out of date.”

General Practice Queensland has awarded a two-year license to Medical-Objects to provide a free secure messaging service to eligible medical practitioners.

Medical-Objects Chief Executive Officer, Glenn Stephens said, “iHealth Care is the perfect example of what can happen when an entire State’s health system is connected. In short, the new services will provide health professionals with a secure, fast, integrated, reliable and easy contact directory and communication system that will improve efficiency, reduce the risk of legal action and allow for re-allocation of human resources within medical organisations.

“Businesses use email as a standard part of daily communication with clients and colleagues, but it is an unsecured and risky way of transmitting highly confidential data. Now, doctors can use Medical-Objects’ secure medical messaging to send patient data over the Internet.

"It is not email-based, but rather a fit-for-purpose real time, secure clinical communication system. Every individual report can only be viewed by those who have been granted specific access," Mr Stephens said.

Similarly, access to the iHealth Care Directory is password protected and restricted to participating subscribers only, so the system cannot be misused.

“Together, these two iHealth Care services will connect Queensland, for better patient care. It is a great step forward for Queensland’s health industry,” Dr Kastrissios said.

ENDS

For further information:

Carla Morison

Redline Communication

Ph: 07 3369 9199

Web Sites

iHealthCare Project

http://www.ihcdirectory.com.au/

General Practice Queensland

http://www.gpqld.com.au/

Medical Objects

http://www.medical-objects.com.au

Comment.

This seems to me to be a great way to demonstrate how much difference standardized secure communications between all the actors in the health system can make. Great effort on the part of all those involved to get to this stage! I really look forward to seeing a better Qld Health System a year or two from now as this is fully rolled out.

David.

Australian Law Reform Commission Releases Major Privacy Report.

This important work was released today.

Australian Law Reform Commission

Monday 11 August

Media Release: 'Australia must rewrite privacy laws for the Information Age'

Detailed Privacy Briefing Notes on 10 key areas:

1. Simplifying and harmonising privacy law and practice
2. Technology-neutral privacy principles should govern rapidly developing ICT
3. New cross-border privacy laws-greater certainty for all Australians
4. Rationalisation and clarification of exemptions to the Privacy Act
5. Improved complaint handling and enforcement
6. Introducing a mandatory data breach notification scheme.
7. Reform of the credit reporting system
8. Protecting Health Information in the Digital Age
9. Children, young people and privacy
10. A statutory clause of action for serious invasions of privacy: getting the balance right

To view or download the ALRC's Privacy Report click here

To order a CD Rom or hardcopy of the ALRC's Privacy Report click here

For a summary of the ALRC's review of Australian Privacy Laws click here

Access all the reports here:

http://www.alrc.gov.au/media/2008/mr11108.html

Important reading!

David.

Useful and Interesting Health IT Links from the Last Week – 10/08/2008

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

These include first:

Satirical Sites Take Aim at Health IT Industry

by George Lauer, iHealthBeat Features Editor

This story has a prerequisite: If you haven't already seen SEEDIE.org and Extormity.com, you might save yourself confusion and frustration by checking them out before reading further.

For those already familiar with the two satirical sites spoofing the health IT industry in general and electronic health records in particular, this story will shed a little light on the motivation behind them. Emphasis on "little." We won't tell you who's behind the sites. They're not ready to go public yet.

But they did agree to answer a few questions from iHealthBeat. Two "executives" -- Extormity CEO Brantley Whittington and SEEDIE Executive Director Sal Obfuscato -- take turns answering in character.

And then site creators do it for real ... sort of.

Much more here:

http://www.ihealthbeat.org/articles/2008/8/7/Satirical-Sites-Take-Aim-at-Health-IT-Industry.aspx?a=1

The sites referred to are found here:

• SEEDIE
• Extormity

The interview and the two sites are very amusing – and well worth a browse – in the spirit they are offered!

Second we have:

Expert discusses computing in medicine

PM - Thursday, 7 August , 2008 18:34:00

Reporter: Mark Colvin

MARK COLVIN: For a century or more, the main weapons of medicine have been the stethoscope, the syringe and the surgeon's saw.

But in modern medicine they're increasingly being supplemented by information technology.

Computers can help a great deal in diagnosis, record-keeping and analysis.

But in some areas Australia is lagging behind in the field of what's called health informatics.

And there's pressure for huge centralised computer systems which could prove extremely costly, especially if things go wrong.

Enrico Coiera is Professor of Health Informatics at the University of NSW.

He spoke at the Centre for Independent Studies Consilium, where I asked him about how Australia rated when it came to computing in medicine.

ENRICO COIERA: Our General Practitioners have about 90 per cent penetration of computers on their desktops which is fantastic by world standards.

But our hospitals certainly are laggards. We can turn out attention to what's happening say in England where the National Health System, the NHS has spent something like 12-15-billion pounds in the last three or four years to start to modernise the IT use underpinning their hospitals and that's certainly not yet happened in Australia.

More here:

http://www.abc.net.au/pm/content/2008/s2328090.htm

It is good to see some good publicity for e-Health on a major national news program. The full interview is available for download from the ABC site.

Third we have:

No blocking expert patient pop ups

5-Jun-2008

By Dr Tony Copperfield

DO you remember the Internet before pop-up blocking software became the norm? Every website you visited would be hidden by a snowstorm of unwanted invitations to meet hot girls from your area, and malicious Windows Messenger prompts: “Your computer may be infected with a virus. Click here to make certain.” And sure enough, if you did, it was.

Nowadays, there’s only one arena where the uninvited and annoying pop-up window still holds sway, and that’s my consulting room.

As Mrs Blob waddles in and I click the mouse to pull up her medical record, I’m already bracing myself for the avalanche of mindless cyber-guano that’s about to rain down.

“ALERT! QOF* data incomplete! Mrs LZ Blob does not have an HbA under 7% on file!” Followed by: “Mrs LZ Blob does not have a total cholesterol under 5.8mmol/l on file!” And: “Mrs LZ Blob does not have a BP reading under 140/85 on file!”

Well, she does now. Because I’ve just made one up. There, right there, on her ‘Current Values’ template, I’ve just typed 138/82 and quite shamelessly clicked on ‘Enter’. Sorted. Ker-ching. No sphygmomanometer, nothing up my sleeve, just Copperfield’s Clinical Acumen being exercised to the max.

Respect is due to Mrs B, for she is the NHS’s ideal punter an ‘Expert Patient’ [The Expert Patients Programme is a self-management program developed for people living with long-term conditions. The aim is to support people to increase their confidence, improve their quality of life and better manage their condition.].

More here (subscription required):

http://www.australiandoctor.com.au/articles/a9/0c0573a9.asp

The article then goes on to say that Mrs B essentially resists all his attempts to have her co-operate in her treatment for a range of serious chronic diseases and it is a problem as his remuneration is linked to compliance with the UK Quality and Outcomes Framework (QOF). Frankly his approach in just making information is essentially illegal and what “Dr” Copperfield should do is remove himself from the care of this patient as his clinical relationship with his patient is clearly over!

Really a sad approach and quite wrong to write such material – even if it tongue in cheek as I suspect (and hope) it is

Fourth we have:

Vic doctors beat bugs online

Grant McArthur | August 08, 2008

A MELBOURNE-developed computer program that could save thousands of lives has taken the fight against killer superbugs to cyberspace.

The web-based prescribing program, designed by Royal Melbourne Hospital doctors, raises alarms when inappropriate or excessive quantities of antibiotics are prescribed. Such prescriptions are a major factor in the development of drug-resistant superbugs in hospitals.

Potentially fatal bugs such as MRSA are contracted by about 200,000 people in Australian hospitals each year.

They are most dangerous to the frail and elderly.

Preventing the overuse of antibiotics would reduce the chances of bacteria developing into antibiotic-resistant superbugs, infections expert Karin Thursky said.

She said 40 per cent of hospital patients were given antibiotics, half of which were inappropriately prescribed.

She said the Guidance DS program would have a huge impact as it was rolled out to 14 hospitals in Victoria and Tasmania, as it had done at the Royal Melbourne.

More here:

http://www.australianit.news.com.au/story/0,24897,24147129-15306,00.html

Antibiotic prescribing in the seriously ill has always been a challenging problem and this work seems to have great promise in making it just that much easier and safer. Well done to all involved – I hope the system can be quickly spread nationwide to all those centres where it can make a difference – once proof of its value is confirmed – which sounds to be very near.

Fifth we have:

Electronic retinas a step closer

August 7, 2008 - 7:00AM

Inspired by the human anatomy, researchers in the United States have created the world's first curved electronic "eye" camera, according to a new study.

The size and shape of a human eye, the device weaves a network of silicon detectors into a flexible mesh, and could usher in a new generation of distortion-free digital and video cameras.

Experiments already under way are testing other potential applications, including a thin, pliable monitor to detect electrical signals travelling across the undulating surface of the human brain.

Its breakthrough design also points the way to the development of artificial electronic retinas that could one day help restore sight, says the study, published in the British journal Nature.

"This approach allows us to put electronics in places where we couldn't before," said John Rogers, an engineer at the University of Illinois, who led the research along with Yonggang Huang of Northwestern University.

"We can now, for the first time, move device design beyond the flatland constraint of conventional wafer-based systems."

A curved array of detectors is "much better suited for use as retinal implants," Rogers said in a statement.

Animal eyes are naturally curved for capturing images, but up to now artificial vision systems have been limited to flat image-recording surfaces.

More here:

http://news.smh.com.au/world/electronic-retinas-a-step-closer-20080807-3rbb.html

Another report with a useful picture is found here.

http://www.smh.com.au/news/technology/just-picture-it--bionic-terminator-eyes/2008/08/07/1217702198814.html

Just picture it - bionic 'Terminator' eyes

This is interesting as is the report there is progress on the Bionic Eye project from the 2020 Summit as reported here.

Bionic breakthrough in sight with an Australian first

Volunteer … Steve Horan will receive a bionic eye this year.
Photo: Jacky Ghossein

Louise Hall Health Reporter
August 10, 2008

AUSTRALIA'S first bionic eye will be implanted by two Sydney researchers.

Using the same cochlear technology that allows the deaf to hear, the device aims to restore basic vision in patients with degenerative eye diseases, allowing them to walk without a cane or guide dog and differentiate between night and day.

Minas Coroneo and Vivek Chowdhury, from Sydney's Prince of Wales Hospital, say the visual prosthesis could be the first - and cheapest - to hit the world market.

Rather than "reinventing the wheel", they have adjusted the cochlear implant to allow patients to perceive light, rather than sound.

"We're using a bionic ear to make a bionic eye," Professor Coroneo said.

It should not cost much more than a cochlear device - $20,000. Instead of a microphone, it will use a camera and more electrodes.

There are 23 groups around the world racing to invent the first functional bionic eye. The ultimate goal is a permanent implant with enough resolution to enable patients to recognise faces and read large print.

More here:

http://www.smh.com.au/news/science/bionic-breakthrough-in-sight-with-an-australian-first/2008/08/09/1218139162870.html

Good luck to those involved in this important work – but it does seem there is a bit of competition for the prize! The sooner a really useful technology emerges the better!

Sixth we have:

'Cyberchondria' gives GPs a webache

Mark Metherell

August 5, 2008

"CYBERCHONDRIA" - the imagined conditions afflicting patients who have turned to the internet for diagnosis - can be a bane for doctors convincing patients of their misdiagnosis, says an internet health expert, Jared Dart.

Dr Dart recalls an elderly patient's relative suggesting on the basis of internet research that the patient required a biopsy of skull tissue. Diagnosis by a doctor actually found "the poor old guy had been having headaches as a result of a muscular-skeletal problem in the neck".

"Many doctors have lamented the rise of the e-health information consumer, suggesting it has led to patient 'cyberchondria' and anecdotal reports of patients bringing health information to doctors abound," Dr Dart says.

His survey of 700 people has found that surfing the net for medical explanations is widespread, although many remained uncertain about the veracity of the information.

More here:

http://www.smh.com.au/news/web/cyberchondria-gives-gps-a-webache/2008/08/04/1217702000290.html

I think Dr Dart has raised an important issue but as we have found the jurors who research those they are judging these days you have to go with the flow and I think the best thing to do is, as a practitioner, have a list of sites that you know are trustworthy and accurate and say to patients if they want to read more – here is where you can go for an independent view. If given 4-5 full scope quality sites the patient will soon be able to be confident of the advice they are receiving.

Last we have our slightly technical note for the week:

Taking advantage of multicore PCs

What app developers need to know to make their software work on new-gen CPUs

Tom Kaneshige (InfoWorld) 05/08/2008 08:56:33

Call it the great multicore discord: a parade of major hardware and software vendors promising desktop applications powered by multicore chips yet all marching out of step, leaving confused software developers in the dust -- but times are changing.

Far out front, chipmakers Intel and AMD have delivered quad-core chips for desktop computers earlier this year. And computers with dual-core chips are now the norm. But only the savviest of developers can harness this massive processing power by weaving a mind-bending web of code that foundational software vendors should have provided. So much of the multicore chips' processing power is unharnessed.

Software vendors are finally closing the gap: Microsoft, Apple, third-party platform vendors, and software developer consortiums are tweaking everything from the operating system schedulers to APIs to languages and libraries to make them multicore-friendly. The goal, of course, is to make it easier for developers to join the multicore movement.

There's no question that the pace is quickening, the gap closing. Apple, for instance, claimed earlier this month that its upcoming Mac OS X Snow Leopard will boast a new technology, code-named Grand Central, that supports multicore chips, along with developer tools that let applications leverage up to eight cores of processing power.

To take advantage of multicore-enabling technologies such as Grand Central and whatever Microsoft may be working on for Windows 7 (the company declined to comment), developers must move up a steep learning curve in areas such as multithreading, parallel, and concurrent.

More here:

http://www.computerworld.com.au/index.php?id=1145268561&eid=-255

This is an interesting long article that essentially explains that most of the extra computing power in the modern multi-core processers is yet to be even partially exploited. It seems the software writers have a bit of work to do yet to catch up with the hardware colleagues!

More next week.

David.

E-Health to be Developed in Africa

I found this to be a very hopeful report indeed!

Developing Countries Must Plan Road Map for eHealth

INTERVIEW
24 July 2008
Posted to the web 24 July 2008

By Boakai M. Fofana
Bellagio

Developing countries in the Global South, which have already introduced innovative technology such as mobile banking, need to drive the development of "eHealth" – the harnessing of Internet-enabled technologies to improve public healthcare, says Karl Brown, associate director of applied technology of the Rockefeller Foundation. He was interviewed by AllAfrica's Boakai Fofana, at a conference on the subject in Bellagio, Italy, which has been sponsored by the foundation.

What is the idea behind the eHealth initiative?

The idea is that technology is at a turning point. In the industrialized countries – i.e. the United States and Europe – there has been long experience with using communication technology in health care. There have been a lot of lessons learned, a lot of mistakes, but also a lot of successes. We feel that in the developing world there is now an opportunity to use information technology in a more integrated way in health-care systems.

The time is now, because we feel that health care systems are undergoing a process of enormous change. There's been a change in the burden of disease in many countries. There are increasing numbers of patients entering the health care system. There's more money being spent on health care in developing countries.

The other reason we think that now is the time for "eHealth" is that there are a thousand flowers blooming. There are a thousand different eHealth pilots around the world. But the space is still fragmented, and there has been a lot of reinvention of the wheel. Now, people are learning from the experience of countries which have moved further.

The other issue that I think is important is interoperability. You have a lot of countries where donors will come and build a database, for instance, to track the HIV program. And then another donor will come in and build a database to track the TB program. And then another donor builds a database to track the malaria program. And none of these databases can talk to one another.

Speaking of the African context, what are you hoping to achieve at the end of this conference?

One of those things we are hoping to achieve is a consensus amongst the participants on the value of eHealth and on the vision for eHealth for the world. Underneath that vision, we would like to work with the participants in achieving a road map for how to bring that about.

Since the focus of this conference is eHealth in the South [developing counties], we have brought a lot of participants from the South to this conference. At the Rockefeller Foundation, we believe the vision, the strategy and the road map should all be driven by the countries who are going to be impacted by this technology. It's not a northern [developed countries] initiative, where we will define the standards and the solutions and then give them to Africa.

Innovations are coming from different places in the world. If you look at innovations in mobile banking, what are the best mobile banking systems in the world? Kenya and South Africa. They are way more advanced than anything we have in the United States. I think innovation is coming from new quarters, so we need to find a way to engage the IT [information technology] sector in Africa and elsewhere in the world in support of better health.

Much more here:

http://allafrica.com/stories/200807240417.html

The two links at the end of the article also provide some useful background and insight.

Read more about Rockefeller's eHealth initiative

http://allafrica.com/healthafrica/health.pdf

The Rockefeller paper is well worth a read as it highlights just how much is possible with the simplest of technology. I was surprised just how much greater mobile phone penetration in Africa compared with the Internet is – as I guess I though both needed a lot of expensive infrastructure – but is seems that the desire to be in communication can overcome major barriers – even in the face of considerable difficulties.

Reading about the issues being faced and the priorities for services and applications is well worth while.

In the context of helping Africa – and in especially addressing issues associated with HIV and TB another major project worth being aware of is found here.

http://openmrs.org/wiki/OpenMRS

As they describe themselves

“OpenMRS^® is a community-developed, open-source, enterprise electronic medical record system framework. We've come together to specifically respond to those actively building and managing health systems in the developing world, where AIDS, tuberculosis, and malaria afflict the lives of millions. Our mission is to foster self-sustaining health information technology implementations in these environments through peer mentorship, proactive collaboration, and a code base that equals or surpasses proprietary equivalents. You are welcome to come participate in our community, whether by implementing our software, or contributing your efforts to our mission!”

All in all – also an exciting initiative and well worth a browse – or more!

David.

Health IT and Its Role in Diabetes Management

I missed the following report until a few days ago!

Report: I.T. Aids Diabetes Management

July 18, 2007

Information technology can play a valuable role in helping providers manage patients with Type-2 diabetes, but costs outweigh the savings for many of the technologies, according to a new report.

The exception, in the report from the Center for Information Technology Leadership, is the use by providers of electronic diabetes registries and clinical decision support software. Use of registries, researchers estimate, could save $14.5 billion in health care expenditures over 10 years. Clinical decision support over the same period could save $10.6 billion.

The Center for Information Technology, created by Boston-based Partners HealthCare System in 2002, previously published reports on the value of computerized provider order entry systems for ambulatory care and standardized national health care information exchange. Funding for the new report, “The Value of Information Technology-Enabled Diabetes Management,” came from a grant by the Robert Wood Johnson Foundation, Princeton, N.J.

More here:

http://www.healthdatamanagement.com/news/15472-1.html

This is the way the authors describe the report

The Value of Information Technology-Enabled Diabetes Management

Diabetes, a chronic condition in which the body has lost its ability to produce insulin or utilize it correctly, is the fifth-leading cause of death by disease in the United States. The Centers for Disease Control estimated in 2005 that more than 20.8 million Americans have diabetes at a cost, according to the American Diabetes Association, of more than $132 billion.

Disease management programs that focus on Type-2 diabetes have been viewed as a means to counter this epidemic. Increasingly, these programs rely on information technologies (IT) to identify patients, engage them more actively in their care, remind providers of appropriate preventive screenings and treatment options, and track patients with diabetes over time. Yet the value that IT-enabled diabetes management programs could bring to Type-2 diabetes care is not known.

To examine this issue, the Center for Information Technology Leadership (CITL) with generous support from the Robert Wood Johnson Foundation and InterSystems, researched the benefits, costs, and quality implications of IT-enabled diabetes management programs (ITDM) in the US. Summarized in our report, The Value of Information Technology-Enabled Diabetes Management, CITL’s research indicates that ITDM can:

• Avoid millions of cases of diabetes complications, such as kidney failure, stroke, heart attacks, and blindness, can be avoided, and can save hundreds of thousands of lives.
• Improve compliance with standards of care, from the current rate of less than 50% to as high as 80%.
• Save money in select cases. Electronic diabetes registries used in physician offices can save a net of $14.5 billion in diabetes-related costs over 10 years. Other forms of ITDM cost more than they save.

More here:

http://www.citl.org/research/ITDM.asp

Links are as follows

Download the Full ITDM Report.
Order a copy of the Full ITDM Report. (You will leave this web site)
View the ITDM Report Expert Panel.

All I can do is apologise for not finding this sooner and encouraging its reading!

Enjoy!

David.

The Personal Health Record Market Starts to Shake Out

The following article appeared a few days ago.

Fed panel tips hat to Microsoft, Google, Dossia for advances in PHR use

By Diana Manos, Senior Editor 07/31/08

Microsoft, Google and Dossia have played a key role in advancing the use of personal health records, according to members of the American Health Information Community.

At a Tuesday AHIC meeting, members of the federal advisory panel hailed these three utility service models as "leading innovators," responsible for a major surge in the use of PHRs.

PHRs are a very dynamic market," said Nancy Davenport-Ennis, chairman of the AHIC Consumer Empowerment Workgroup."Today there are more than 200 solutions, some through independent systems, some through providers, employers and consumer-controlled groups. This is a great step forward from when AHIC started 23 meetings ago."

John Moore of Chilmark Research, a presenter at AHIC's meeting, said PHRs are used to control behavioral change in patients and lower healthcare costs. But obstacles remain – doctors are skeptical about their accuracy, and portability is "all over the map."

Moore said the utility service models, such as those provided by Dossia, Google Health and Microsoft HealthVault, allow consumers to stay firmly in control of their records, and portability has been demonstrated.

"These groups are doing the heavy lifting that other groups can't do now," he said. "Adoption potential is high because the value is high."

Many more details here:

http://www.healthcareitnews.com/story.cms?id=9659

This seems to me to be adding onto the comments being made by a range of commentators that the concept of a physician held EHR is now morphing into or being enhanced by the patient increasingly taking control of their own information.

It seems to me virtually inevitable that over the next few years having a personal health record – independent of your doctor but having some input from them often – will become totally mainstream and as common as using electronic banking – especially for those with chronic health problems they need to manage.

Wait and see!

David.

The European Union and the Shared EHR

In the last week or so there have been a few reports of a case which was resolved in the European Court of Human Rights on Medical Privacy.

European judgement casts doubts on NHS CRS consent

25 Jul 2008

A GP campaigning against the consent model for the NHS Care Records Service (NCRS) claims a European Court of Human Rights judgement reinforces his view that the NHS database is unlawful.

In a judgement published last week the European Court of Human Rights ruled that a nurse in Finland had her right to privacy breached. The nurse had been attending a clinic for treatment of HIV and at the same time was working in a different department of the same hospital. It became apparent that staff in her work department had looked at her computerised medical record and she was denied subsequent employment.

The European Court of Human Rights ruled that there had been a violation of article eight of the European Convention on Human Rights and awarded the nurse compensation.

More here

http://www.ehiprimarycare.com/news/3993/european_judgement_casts_doubts_on_nhs_crs_consent

The full judgement is available here.

http://cmiskp.echr.coe.int/tkp197/view.asp?item=1&portal=hbkm&action=html&highlight=Finland&sessionid=12272189&skin=hudoc-en

If the URL does not work – here is the case header

CASE OF I v. FINLAND

(Application no. 20511/03)

JUDGMENT

STRASBOURG

17 July 2008

This judgment will become final in the circumstances set out in Article 44 § 2 of the Convention. It may be subject to editorial revision.

In the case of I v. Finland,

The European Court of Human Rights (Fourth Section), sitting as a Chamber composed of:

Nicolas Bratza, President,
Lech Garlicki,
Ljiljana Mijović,
David Thór Björgvinsson,
Ján Šikuta,
Päivi Hirvelä,
Mihai Poalelungi, judges,
and Lawrence Early, Section Registrar,

Having deliberated in private on 24 June 2008,

Delivers the following judgment, which was adopted on that date.

The basic details are outlined here:

European Court fines Finland for data breach

25 Jul 2008

The European Court of Human Rights has ordered the Finnish government to pay out €34,000 because it failed to protect a citizen's personal data, by not adequately securing and protecting a patient’s confidential record.

The case could prove significant by creating a legal precedent, based on the European Convention on Human Rights, linking data security and human rights.

The Court made its ruling based on Article 8 of the Convention, which guarantees every citizen “the right to respect for his private and family life, his home and his correspondence.” It said it was uncontested that the confidentiality of medical records is a vital component of a private life.

It also said Finland had failed to protect the confidentiality of patient information and ordered the state to pay a nurse about €14,000 in damages and €20,000 in costs.

The nurse involved in the case worked in a public hospital between 1989 and 1994 on a series of fixed term contracts. During the period, she paid regular visits to the same hospital’s infectious diseases clinic, having been diagnosed with HIV.

In 1992, it transpired that her colleagues at the hospital’s ophthalmic department had had access to her patient records. Three years later, her contract was not renewed.

The woman began to suspect that news of her disease had spread to other employees and asked for details of who had accessed her medical records and when. The health authorities only kept a note of the last five people to have accessed a record.

According to legal electronic newsletter Out-Law, the Court ruled that public bodies and governments will fall foul of the Convention if they fail to keep data private that should be kept private.

The woman in the case did not have to show a wilful publishing or release of data, it said. A failure to keep it secure was enough to breach the Convention.

The Strasbourg court found unanimously that the district health authority, by failing to establish a system from which the nurse’s confidential patient information could not be accessed by staff who did not treat her, had violated Article 8.

The woman, known in the case as I, sued the district health authority for failing to keep her medical records confidential.

More here:

http://www.e-health-insider.com/news/3992/european_court_fines_finland_for_data_breach

As I read it, what the court is saying is that there is an obligation on the part of record holders to ensure only those with a genuine ‘need to know’ and a genuine role in the patient’s care should be able to access the clinical record and it is up to the organisation holding the record that this is true.

Those, like NEHTA, who propose shared records where many people have access, need to be clear what the expectations of civilised communities are about how their private information is protected. If I had HIV, or another stigmatizing illness, I certainly would want confidence that my privacy would be protected and that I would be entitled to serious redress if this was not the case.

I recognise how challenging this all is but that does not mean we can ignore probably the most authoritative and experienced court on Human Rights the world has.

David.