Another Issue The Proponents Of The myHR Need To Face. Lack Of Data Accuracy.

This appeared last week:

Should you trust what e-records tell you?

Antony Scholefield

22 May 2018

GPs are repeatedly told that electronic medical records will fix the problems of faulty memories, illegible hospital handover notes and patients who aren’t faithful to one GP (but don’t tell you). But do you trust what your computer says?

Researchers from Perth read the electronic patient records of almost 1000 patients and then checked with the real-life patient if they were accurate.

The results focused on whether patients had received their flu vaccination or not. These searches found that, in 84% of cases, the electronic records and the patients’ memories were the same. However, in 16% of cases, the computer said no but the patient said yes — or the other way around.

The first scenario was more common by a fair stretch (the patient said they had been vaccinated, but it wasn’t on their electronic patient record).

As the researchers from the WA Department of Health pointed out, this might be because they had the vaccination at work or a pharmacy, so it was easily missed.

They also looked at the accuracy of electronic records covering the presence of diabetes, asthma, chronic heart disease or pregnancy.

They found that concordance was highest for diabetes (96%), then heart disease (92%), pregnancy (90%) and asthma (89%).

More here:

https://www.medicalobserver.com.au/professional-news/should-you-trust-what-e-records-tell-you

What this article is telling you is that the source articles for the myHR have very significant omissions and errors – so just how useful is it to try and use such inaccurate records in an aggregate sense. Not very would be my feeling.

More useful would be to design a program to improve the accuracy of the records we have. I suspect that would be more useful than gathering all these erroneous records together and trying to make something of them!

BTW – does anyone have the source paper – some my like to read it I suspect and I can’t find it.

David.

The New York Times Points Out How Useless The myHR Will Be For Serious Clinical Research.

This appeared a few days ago.

New Cancer Treatments Lie Hidden Under Mountains of Paperwork

By Gina Kolata

May 21, 2018

Dr. Nikhil Wagle thought he had a brilliant idea to advance research and patient care.

Dr. Wagle, an oncologist at the Dana Farber Cancer Institute in Boston, and his colleagues would build a huge database that linked cancer patients’ medical records, treatments and outcomes with their genetic backgrounds and the genetics of their tumors.

The database would also include patients’ own experiences. How ill did they feel with the treatments? What was their quality of life? The database would find patterns that would tell doctors what treatment was best for each patient and what patients might expect.

The holdup, he thought, would be finding patients. Instead, the real impediment turned out to be gathering their medical records.

In the United States, there is no single format used by all providers, and hospitals have no incentive to make it easy to transfer records from one place to another. The medical records mess is hobbling research and impeding attempts to improve patient care.

“Data are trapped,” said Dr. Ned Sharpless, director of the National Cancer Institute. “This is a huge problem. It is phenomenally important.”

The cancer institute has invested millions of dollars into determining the genetic sequences of patients’ tumors, and researchers have found thousands of genes that seem to drive tumor growth.

But until patients’ medical records are linked to the genetic data, life-or-death questions cannot be answered.

“What drug did they get? Did they respond? Did they survive? Were they cured?” Dr. Sharpless asked.

The federal government has mandated uniform standards for electronic health records. “At this point, they are not to a level that helps with the detailed clinical data that we need for the scientific questions we want to ask,” Dr. Wagle said.

A few private companies are trying to tackle the problem. Flatiron Health, just bought by Roche, has obtained about 2.2 million records of cancer patients from medical centers and made them available for research after stripping them of identifiable information.

But Flatiron must employ 900 nurses and certified tumor registrars, people with master’s degrees in coding data, to put it all into a usable form.

“About 50 percent, if not more, of the critical details we need for research are trapped in unstructured documents,” said Dr. Amy Abernethy, the company’s chief medical officer.

“They are in PDFs. Maybe a doctor put in a note by hand, maybe a doctor typed it. That note became a narrative. It is not something that can easily be put into a spreadsheet.”

Dr. Sharpless worries that the data acquired by companies like Flatiron will not be readily available to researchers. But if the companies manage to solve the medical records problem cheaply, he said, “we’d like to work with them to figure out how to liberate the data.”

Dr. Wagle is making data from medical records and patients’ experiences public as he gets them. After 2 1/2 years, though, he is disappointed by how little there is to share.

The patient who inspired his project had a lethal form of thyroid cancer. She was expected to die in a few months. In desperation, doctors gave her a drug that by all accounts should not have helped.

To everyone’s surprise, her tumors shrank to almost nothing, and she survived. She was an “extraordinary responder.”

Vastly more here:

https://www.nytimes.com/2018/05/21/health/medical-records-cancer.html

Much the same with the “data are trapped” will happen with the myHR

The myHR, as we all know, is a mountain of .pdfs with some atomic data and images etc. to handle pathology and imaging results. The closest to atomic data will be the medicines data I would suspect.

Data at the level described above may be partially captured but will more than likely only even be partially available in practice systems.

Sadly I suspect the solution of re-entering the important data is going to be the only viable one as it has turned out to be in the U.S. at a cost I suspect no one will be able to afford.

So, what sounds really simple turns out to be just too hard!

David.

Maybe Real Time Prescription Monitoring Is Not All It Is Cracked Up To Be.

This week we have had more calls for prescription monitoring:

See here:

Queensland needs real-time prescription monitoring 'urgently', coroner says, amid opioid deaths

By Michelle Rafferty

A prescription monitoring system to prevent "doctor shopping" in Queensland is needed urgently within the next two years, rather than the state waiting for a national scheme to come online, an inquest into four opioid deaths has found.

Coroner James McDougall examined the deaths of William House, Jodie Anne Smith, Vanessa Joan White and Daniel Keith Milne between 2012 and 2014.

Medical bodies including the Australian Medical Association and the Pharmacy Guild have repeatedly called for a real-time monitoring system to be introduced in Queensland to prevent addicts from visiting different doctors to collect multiple opioid prescriptions.

There are already moves towards a national monitoring system, after Federal Health Minister Greg Hunt announced $16 million in funding for one last July.

But Mr McDougall said Queensland Health should look to implement its own real-time tracking system "urgently" — definitely within two years.

"The number of deaths that will occur in the interim whilst implementation is taking place is alarming," he said.

"Coronial statistics indicate an annual death toll from prescription opioids approaching 1,500 people each year and increasing.

"Given the growing epidemic associated with opioid misuse, the states and territories need to take responsibility for addressing the increasing issues associated with the prescribing, dispensing and monitoring of drugs of dependence."

The coroner also said more education was needed for doctors prescribing schedule 8 medicines.

More here:

http://www.abc.net.au/news/2018-05-21/coroner-calls-for-prescription-system-after-alarming-deaths/9783130

and here:

 ‘Urgency’ to implement real-time script monitoring: coroner

Sheshtyn Paola — 24/05/2018

An inquest into four deaths related to opioid prescribing and doctor shopping has highlighted the urgent need for real-time monitoring

A joint inquest into four recent deaths was recently held in the Coroners Court of Queensland with the aim to consider the issues associated with misuse of opioid prescription medication in Queensland and, more broadly, Australia.

Coroner James McDougall explored the circumstances surrounding the deaths of William House, 30 years old at the time of his death; Jodie Anne Smith, 41 years old at the time of her death; Vanessa Joan White, 38 years old at the time of her death; and Daniel Keith Milne, 40 years old at the time of his death.

Each of the patients had participated in doctor shopping in the lead up to their deaths, and in several instances had been able to gain access to large amounts of OxyContin and fentanyl from various doctors at different medical practices, sometimes on the same day or within days of the last prescription.

This was in addition to sometimes being supplied opioids after presenting at hospital emergency departments.

More here:

https://ajp.com.au/news/urgency-to-implement-real-time-script-monitoring-coroner/

But then this appears:

Reviews |8 May 2018

Association Between Prescription Drug Monitoring Programs and Nonfatal and Fatal Drug Overdoses: A Systematic Review

David S. Fink, MPH; Julia P. Schleimer, BS; Aaron Sarvet, MPH; Kiran K. Grover, BA; Chris Delcher, PhD; Alvaro Castillo-Carniglia, PhD; June H. Kim, PhD; Ariadne E. Rivera-Aguirre, MPP; Stephen G. Henry, MD; Silvia S. Martins, MD, PhD; Magdalena Cerdá, DrPH

Abstract

Background:

Prescription drug monitoring programs (PDMPs) are a key component of the president's Prescription Drug Abuse Prevention Plan to prevent opioid overdoses in the United States.

Purpose:

To examine whether PDMP implementation is associated with changes in nonfatal and fatal overdoses; identify features of programs differentially associated with those outcomes; and investigate any potential unintended consequences of the programs.

Data Sources:

Eligible publications from MEDLINE, Current Contents Connect (Clarivate Analytics), Science Citation Index (Clarivate Analytics), Social Sciences Citation Index (Clarivate Analytics), and ProQuest Dissertations indexed through 27 December 2017 and additional studies from reference lists.

Study Selection:

Observational studies (published in English) from U.S. states that examined an association between PDMP implementation and nonfatal or fatal overdoses.

Data Extraction:

2 investigators independently extracted data from and rated the risk of bias (ROB) of studies by using established criteria. Consensus determinations involving all investigators were used to grade strength of evidence for each intervention.

Data Synthesis:

Of 2661 records, 17 articles met the inclusion criteria. These articles examined PDMP implementation only (n = 8), program features only (n = 2), PDMP implementation and program features (n = 5), PDMP implementation with mandated provider review combined with pain clinic laws (n = 1), and PDMP robustness (n = 1). Evidence from 3 studies was insufficient to draw conclusions regarding an association between PDMP implementation and nonfatal overdoses. Low-strength evidence from 10 studies suggested a reduction in fatal overdoses with PDMP implementation. Program features associated with a decrease in overdose deaths included mandatory provider review, provider authorization to access PDMP data, frequency of reports, and monitoring of nonscheduled drugs. Three of 6 studies found an increase in heroin overdoses after PDMP implementation.

Limitation:

Few studies, high ROB, and heterogeneous analytic methods and outcome measurement.

Conclusion:

Evidence that PDMP implementation either increases or decreases nonfatal or fatal overdoses is largely insufficient, as is evidence regarding positive associations between specific administrative features and successful programs. Some evidence showed unintended consequences. Research is needed to identify a set of “best practices” and complementary initiatives to address these consequences.

Primary Funding Source:

National Institute on Drug Abuse and Bureau of Justice Assistance.

http://annals.org/aim/article-abstract/2680723/association-between-prescription-drug-monitoring-programs-nonfatal-fatal-drug-overdoses?doi=10.7326%2fM17-3074

The summary review in Journal Watch said in a comment:

“Results of this systematic review are tempered by the observational design of the included studies, moderate-to-high risk for bias in nearly all the studies, and heterogeneity of PDMP features among states (e.g., some states require clinicians to review PDMP data when prescribing narcotics, whereas others do not; similarly, not all states share data). Editorialists emphasize that, although PDMPs probably will curb prescription opioid supplies in U.S. communities, these same communities also require efforts to address heroin and other illegal drug supplies and initiatives to engage patients in drug-treatment programs.”

See here:

https://www.jwatch.org/na46693/2018/05/22/do-prescription-drug-monitoring-programs-prevent-opioid

So what is clear here is that not only do you need prescription monitoring but you have to do it right. The full paper provides some tips as to what ‘right’ may look like!

Clearly worth a read.

David.

Has The ADHA Lost Its Social License To Try To Give Us All A myHR?

This article appeared last week:

It’s time to put consumers in the driver’s seat in Big Data economy

By Lauren Solomon • 21/05/2018

If the public doesn’t feel it can say no, all the privacy policies and terms and conditions can’t solve society’s data governance woes.

The Australian government has allocated $44.6 million over four years in this year’s budget to establish the new Consumer Data Right (CDR). This investment is slated to support the ACCC, OAIC and CSIRO to establish appropriate rules and standards and to ensure the impacts of the CDR are consistent with the Privacy Act.

This is a welcome step, because our latest research uncovers the yawning gap between public expectation and current practices when it comes to data collection, sharing and use.

In a survey of 1004 Australians conducted for the Consumer Policy Research Centre by Roy Morgan Research from March to April this year, 94% of those surveyed did not read the privacy policies or terms and conditions for all the products they signed up to in the past 12 months.

For those who had waded their way through at least one lengthy, complex, privacy policy — two-thirds accepted the terms even though they felt uncomfortable, and 73% did so because it was the only way they could access the product or service.

It’s the presumed consent to these policies which often allows consumer data to be captured, transferred, on-sold or transformed for other purposes well beyond what any consumer could have reasonably expected. The policies can also change, making it difficult to know what we consented to in the first place.

Some 70% of survey respondents were not comfortable with their basic data, such as their purchase histories and location data, being shared; while more than 85% were opposed to companies sharing more personal information, like their phone contacts and text message logs.

Yet all of this information is regularly captured and used for personalising ads, offers and sponsored content on digital platforms and mobile apps, and, despite their concerns, most consumers reported continuing to use these digital products and services.

Much innovation, efficiency and consumer benefits arise from data analysis, collection and sharing. We need to ensure this is being done responsibly. This means putting consumers, not companies, in the driver’s seat when it comes to their data.

This also means striking the balance right between encouraging innovation, protecting privacy and enabling consumer choice.

Lots more here:

https://www.themandarin.com.au/92912-its-time-to-put-consumers-in-the-drivers-seat-in-big-data-economy/

Almost at the same time we see this press release:

https://nps.org.au/media/health-report-confirms-consumers-want-control-of-their-own-health-data

Health report confirms: consumers want control of their own health data

Australians want ownership and control of their own health data and want to be asked for consent when their data is used by government, private companies or researchers. 

---

This stand-out finding was revealed today in the Engaging Consumers in their Health Data Journey Report jointly published by Consumers Health Forum and NPS MedicineWise. The comprehensive report was generated through qualitative interviews, literature reviews, a round table discussion with key stakeholders and consumer representatives, and a nationally representative survey of 1,013 Australians.

Survey results gave the clearest indication that Australians want control over their health data, with 96% of Australians believing they should have access to their own health data and 90% of respondents agreeing they should be asked for permission if either a government department or a private organisation wants to use the data.

The research found that consumers are more likely to give permission to share their data if they understand how their data will be used and any benefits that will come from its use. Almost two-thirds (62.5%) of survey respondents said they would be comfortable with the Government using their data to support health care providers to improve the care of others in the community. The report also revealed that consumers are more willing to share their data when it is for public or individual good, and are significantly less likely to share it if the use is for commercial gain. That said, privacy is a real issue, with nearly two thirds (64.8%) of respondents stating they believe sharing their data is acceptable if they are not identified and just one in five (21.8%) comfortable with their data being shared if they are identified.

Dr Lynn Weekes, CEO of NPS MedicineWise says, “Developing models of consent that are both acceptable to consumers and feasible for research and health communities should be considered a key challenge and priority. The onus is on organisations to put in place clear, transparent, open and two-way communications about how and by whom their data will be used, along with the benefits and any risks. Again, involving consumers in designing these communications will ensure they meet consumers’ needs, building their trust and willingness to share data.”

The Consumers Health Forum of Australia (CHF) was commissioned by NPS MedicineWise in December 2016 to conduct research about consumers’ attitudes to health data. The project and resulting reports were developed collaboratively.

The publication of this survey coincides with the Australian Government’s release of a framework for how data in the My Health Record System can be used and protected for public health and research purposes.

“My Health Record data will be available on a de-identified basis for use by policy makers and researchers to make evidence-based decisions about new health policies and programs to the benefit of consumers. Consultation that shaped the framework highlighted how important it is for the community to have their health care information kept private with the right protections and safeguards in place” says Leanne Wells, CEO of the Consumers Health Forum.

“Without that trust and confidence we know from this research this will negatively influence consumers’ willingness to consent to the use of their data. It is heartening to see that the findings of the research are reflected in the framework, particularly that My Health Record data should not be used for commercial or non-health related purposes, such as determining eligibility for welfare benefits, insurance assessments and direct marketing to consumers.”

The report highlights population sub-groups with specific concerns about data use that will require appropriate consultation and involvement. These include Aboriginal and Torres Strait Islander consumers, cultural groups, consumers who have had experiences that impact on their levels of trust and those who are concerned about discrimination due to mental health or other health issues.

The full report is available for review below.

Report: Engaging consumers in their health data journey(2722 KB)

Date published : 23 May 2018

Media enquiries

NPS MedicineWise

Eve Hanks:

• 0419 618 365
• ehanks@nps.org.au

Independent, not-for-profit and evidence-based, NPS MedicineWise enables better decisions about medicines, medical tests and other health technologies. We receive funding from the Australian Government Department of Health.

Consumers Health Forum of Australia

Mark Metherell:

• 0429 111 986
• M.Metherell@chf.org.au

CHF is Australia’s leading advocate on consumer health care issues.

We work to achieve safe, good quality, timely healthcare for all Australians, supported by the best health information and systems the country can afford

----- End Release.

It is really striking to see the alignment of what people seem to be asking for and what the Europeans have achieved in the GDPR.

Dr Katharine Kemp usefully summarises the GDPR rules in the following way and looks forward to what we may want in OZ..

“The EU General Data Protection Regulation (GDPR), which comes into effect on 25 May 2018, provides one model for improved consent. Under the GDPR, consent:

… should be given by a clear affirmative act establishing a freely given, specific, informed and unambiguous indication of the data subject’s agreement.

The Privacy Act should be amended along these lines to set higher standards for consent, including that consent should be:

·         explicit and require action on the part of the customer – consent should not be implied by the mere use of a website or service and there should be no pre-ticked boxes. Privacy should be the default;

·         unbundled – individuals should be able to choose to consent only to the collection and use of data essential to the delivery of the service, with separate choices of whether to consent to additional collections and uses;

·         revocable – the individual should have the option to withdraw their consent in respect of future uses of their personal data at any time. “

See here:

https://theconversation.com/94-of-australians-do-not-read-all-privacy-policies-that-apply-to-them-and-thats-rational-behaviour-96353

It is clear just how un-conformant with these a large opt-out database like the myHR is, and how it no longer fits the present mood for specific consent etc..

I suspect the demand for the changes suggested have accelerated recently because of the scandals around Facebook and Equifax but have been underway for a few years and that the time for the myHR opt-out plan has passed. Realistically it may still happen, but I suspect it may later be wound back as it is found not to be all that clinically useful, to offer poor value for money and a few horror stories of information leaks etc. emerge.

I believe the times are a’changin and the myHR is an idea of another, past time as these surveys highlight.

David.

Postscript:

It is worth noting similar sentiments were set out in this week's Economist.

Here is the link:

https://www.theaustralian.com.au/news/inquirer/eu-law-reflects-belated-public-interest-in-privacy/news-story/f4f768206da7e87848b88f9282cb3529

D.

Senate Estimates Alert: - Today 9.45am - 11am The NHMRC and ADHA

Here is the link to the program etc:

https://www.aph.gov.au/Parliamentary_Business/Senate_Estimates/ca

David.

Weekly Australian Health IT Links – 28th May, 2018.

Here are a few I have come across the last week or so. Note: Each link is followed by a title and a few paragraphs. For the full article click on the link above title of the article. Note also that full access to some links may require site registration or subscription payment.

General Comment

Well this week was all about the reaction to Tim Kelsey’s evangelical speech at the National Press Club on Wednesday. The Press Club gave him a good hearing but seemed a little sceptical if I read the mood of the reporters correctly. There are links to text and video on the blog if you want to watch / read again.

Also lots of activity on the GDPR which came into effect on May 25, 2018.

-----

https://www.computerworld.com.au/article/641549/digital-heath-agency-no-conspiracy-keep-my-health-record-opt-out-quiet/

Digital Heath Agency: ‘No conspiracy’ to keep My Health Record opt-out quiet

‘There is no Big Brother’ says CEO Tim Kelsey

George Nott (Computerworld) 24 May, 2018 16:41

The CEO of the Australian Digital Health Agency (ADHA) – the body responsible for implementing and operating the My Health Record – has rejected claims Australian’s right to opt-out of the electronic health record system is not being sufficiently communicated.

Australians will have three months from mid-July to opt out of having a My Health Record automatically created for them. After the opt-out deadline has passed the record cannot be deleted, only made “unavailable” to health providers and individuals, the Department of Health revealed last year.

Speaking at the National Press Club in Canberra today, ADHA chief Tim Kelsey highlighted the clinical benefits of the majority of Australians having electronic health records, and countered claims that the agency was keeping the opt-out right quiet to achieve it.

-----

www.news.com.au

Australian Digital Health Agency CEO Tim Kelsey grilled on My Health Record system at National Press Club

Sue Dunlevy, News Corp Australia Network

THERE is no conspiracy to keep Australians in the dark about the new online health record to be given to every Australian at the end of this year, the head of the agency rolling it out says.

Tim Kelsey has confirmed there will be no national radio, television or newspaper advertising campaign informing Australians the record will be created for them at the end of this year unless they opt out.

Households will not even get a letter explaining the new record, the head of the government’s Australian Digital Health Agency says.

-----

https://ajp.com.au/news/keeping-in-the-network/

Stay in the network

Chris Brooker — 24/05/2018

Pharmacists told to get ready for Australia’s revolutionary new opt-out e-health record network

Pharmacists will need support and education to ensure their patients achieve the optimum benefit from Australia’s soon-to-be implemented opt-out My Health Record system.   

Australian Digital Health Agency CEO Tim Kelsey delivered his Your Health in Your Hands – the Digital Evolution of Health and Care in Australia speech at the National Press Club yesterday and outlined the collaboration needed between governments, consumers and clinicians to make data and technology work better for modern health.

In particular he discussed the importance of the pending shift to an opt-out e-health record and the role of each sector in making this work best to improve health care and decision making. 

-----

https://www.innovationaus.com/2018/05/My-Health-Record-an-abuse-of-trust

DENHAM SADLER

May 23, 2018

My Health Record an 'abuse of trust'

E-Health

Digital rights advocates are calling on Australians to opt-out of the My Health Record service after labelling the government’s approach to the digital service an “abuse of trust”.

My Health Record is an electronic health record that has been in the works for more than five years. It is currently available as an opt-in service requiring informed consent, with the government claiming that more than five million Australians now having a record.

The government recently announced that it would instead move to an opt-out model due to a low uptake of the service, with Australians given a three-month period to actively remove consent before being given an online record by default.

The three-month opt-out period will begin from 16 July.

-----

https://chf.org.au/media-releases/health-report-confirms-consumers-want-control-their-own-health-data

Health report confirms: consumers want control of their own health data

23 May, 2018

Australians want ownership and control of their own health data and want to be asked for consent when their data is used by either government, private companies or researchers.

This stand-out finding was revealed today in the Engaging Consumers in their Health Data Journey Report jointly published by Consumers Health Forum and NPS MedicineWise.

The comprehensive report was generated through qualitative interviews, literature reviews, a round table discussion with key stakeholders and consumer representatives, and a nationally representative survey of 1,013 Australians.

-----

https://www.2gb.com/podcast/privacy-concerns-over-my-health-record-system/

Privacy concerns over My Health Record system

20 May, 2018 / 04:13

Rev Bill Crews

Rev. Bill spoke to Bernard Robertson-Dunn, chair of the Health Committee for The Australian Privacy Foundation, about the My Health Record opt-out function and privacy concerns as healthcare industries sign up to connect with My Health Record.

Download this podcast here

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http://www.sunraysiadaily.com.au/story/5427816/letters-keep-your-health-record-online-for-emergencies/

LETTERS: Keep your health record online for emergencies

25 May 2018, 3:30 a.m.

A PERSON’S life can be saved in an emergency with an online health record.

I urge all country people to ensure they have a My Health Record – an online summary of all their health information.

Country people are more likely to be brought into an emergency department from a heart attack, car accident or diabetic coma. 

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https://www.myhealthrecord.gov.au/news/media-release-nation-empowered-through-improved-digital-health-services

Media release - Nation empowered through improved digital health services

24 May 2018

Digital information is the bedrock of high quality healthcare. Harnessing the power of the modern information revolution is one of the first priorities for governments to improve the safety and efficiency of healthcare through better use of data and technology.

Australian Digital Health Agency CEO Tim Kelsey delivered his Your Health in Your Hands – the Digital Evolution of Health and Care in Australia speech at the National Press Club today and outlined the collaboration needed between governments, consumers, clinicians, and entrepreneurs to make data and technology work better for modern health.

“Australia has one of the best systems in the world – by any measure. We are at the forefront of medical research, we have world-class facilities, and the people that provide care are among the most highly skilled and committed professionals anywhere.

Note – This links to speech transcript and to a list of myHR Supporters so everyone can be assured the myHR is a fabulous idea.

-----

https://www.healthcareit.com.au/article/it-glitch-hits-queensland-health-taking-down-clinical-systems

IT glitch hits Queensland Health, taking down clinical systems

Lynne Minion | 22 May 2018

Queensland Health moved quickly to fix an IT meltdown last week that brought down clinical systems statewide.

Access to patient records, as well as admissions, transfer and medication systems were disrupted by the glitch that hit at about 10am on Thursday.

Department staff worked with the state government's primary ICT services provider CITEC to solve the problems with the online-based systems, and contingency arrangements were activated to minimise any impact on services.

-----

https://www.medicalobserver.com.au/professional-news/should-you-trust-what-e-records-tell-you

Should you trust what e-records tell you?

Antony Scholefield

22 May 2018

TECH TALK

GPs are repeatedly told that electronic medical records will fix the problems of faulty memories, illegible hospital handover notes and patients who aren’t faithful to one GP (but don’t tell you). But do you trust what your computer says?

Researchers from Perth read the electronic patient records of almost 1000 patients and then checked with the real-life patient if they were accurate.

The results focused on whether patients had received their flu vaccination or not. These searches found that, in 84% of cases, the electronic records and the patients’ memories were the same. However, in 16% of cases, the computer said no but the patient said yes — or the other way around.

-----

http://www.abc.net.au/news/2018-05-21/coroner-calls-for-prescription-system-after-alarming-deaths/9783130

Queensland needs real-time prescription monitoring 'urgently', coroner says, amid opioid deaths

By Michelle Rafferty

21 May, 2018

A prescription monitoring system to prevent "doctor shopping" in Queensland is needed urgently within the next two years, rather than the state waiting for a national scheme to come online, an inquest into four opioid deaths has found.

Coroner James McDougall examined the deaths of William House, Jodie Anne Smith, Vanessa Joan White and Daniel Keith Milne between 2012 and 2014.

Medical bodies including the Australian Medical Association and the Pharmacy Guild have repeatedly called for a real-time monitoring system to be introduced in Queensland to prevent addicts from visiting different doctors to collect multiple opioid prescriptions.

-----

https://ajp.com.au/news/urgency-to-implement-real-time-script-monitoring-coroner/

‘Urgency’ to implement real-time script monitoring: coroner

Sheshtyn Paola — 24/05/2018

An inquest into four deaths related to opioid prescribing and doctor shopping has highlighted the urgent need for real-time monitoring

A joint inquest into four recent deaths was recently held in the Coroners Court of Queensland with the aim to consider the issues associated with misuse of opioid prescription medication in Queensland and, more broadly, Australia.

Coroner James McDougall explored the circumstances surrounding the deaths of William House, 30 years old at the time of his death; Jodie Anne Smith, 41 years old at the time of her death; Vanessa Joan White, 38 years old at the time of her death; and Daniel Keith Milne, 40 years old at the time of his death.

-----

https://www.opengovasia.com/articles/australias-my-health-record-to-include-diagnostic-imaging-reports-and-assist-in-better-pallia

Australia’s My Health Record to include diagnostic imaging reports and assist in better palliative care

Teresa Umali

21 May 2018

Australians will receive improved diagnostic imaging reports after Perth Radiological Clinic (PRC), NSW Health and Mater Group announce connections to My Health Record. At the same time, the My Health Record system also caters to the complex needs of palliative care patients.

Having a My Health record is important because it provides an online summary of a person’s key health information, which is controlled by the individual, allowing access to health care providers involved in a person’s care in order to deliver better health outcomes for patients.

An announcement by the Australian Digital Health Agency discussed how Australians will receive improved diagnostic imaging reports after Perth Radiological Clinic (PRC), NSW Health and Mater Group announce connections to My Health Record. An enhanced access to diagnostic imaging reports will be granted to Australians living in Western Australia, New South Wales and Queensland after the Perth Radiological Clinic (PRC), NSW Health, and the Mater Group, respectively, have all announced connections to My Health Record.

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https://www.themandarin.com.au/92912-its-time-to-put-consumers-in-the-drivers-seat-in-big-data-economy/

It’s time to put consumers in the driver’s seat in Big Data economy

By Lauren Solomon • 21/05/2018

If the public doesn’t feel it can say no, all the privacy policies and terms and conditions can’t solve society’s data governance woes.

The Australian government has allocated $44.6 million over four years in this year’s budget to establish the new Consumer Data Right (CDR). This investment is slated to support the ACCC, OAIC and CSIRO to establish appropriate rules and standards and to ensure the impacts of the CDR are consistent with the Privacy Act.

This is a welcome step, because our latest research uncovers the yawning gap between public expectation and current practices when it comes to data collection, sharing and use.

In a survey of 1004 Australians conducted for the Consumer Policy Research Centre by Roy Morgan Research from March to April this year, 94% of those surveyed did not read the privacy policies or terms and conditions for all the products they signed up to in the past 12 months.

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http://www.afr.com/technology/government-orders-report-into-ai-dangers-20180520-h10ayf

• May 20 2018 at 8:38 PM

Government orders report into AI dangers

by Robert Bolton

The government will spend almost half a million dollars researching the risks of artificial intelligence and the internet of things.

Two reports will be produced by the Australian Council of Learned Academies (ACOLA) to look at how Australia can maximise the benefits of the new technologies, but avoid negative impact on the economy and individuals.

General Manger of ACOLA, Dr Angus Henderson, said a lot of countries had been quicker off the mark with artificial intelligence, including near neighbours such as Singapore. He said Australia had plenty of AI and Internet of Things capability in the shape of companies such as Siemens, GE and CISCO which had big operations in the here.

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https://www.zdnet.com/article/australian-department-of-health-using-blockchain-for-medical-research-records/

Australian ​Department of Health using blockchain for medical research records

Australian secure cloud provider Vault Systems and blockchain startup Agile Digital have combined forces to provide the department with an immutable record for tracking health data research.

By Asha McLean | May 20, 2018 -- 22:00 GMT (08:00 AEST) | Topic: Innovation

The Australian Department of Health is working on a proof of concept that uses blockchain to record who is accessing its medical data.

Teaming up with secure cloud provider Vault Systems to host the data, and local startup Agile Digital for its distributed ledger technology, the department is exploring blockchain as means to prove who is accessing medical data, why they're accessing it, and to securely record research queries.

Speaking with ZDNet about the project, Agile Digital executive director David Elliot said the department was seeking a platform that supports research on health data, while maintaining privacy on citizen data.

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https://www.medicalobserver.com.au/professional-news/4-ways-scammers-target-gps-and-how-to-protect-yourself

4 ways scammers target GPs — and how to protect yourself

Zilla Efrat

24 May 2018

SPECIAL FEATURE

Some criminals see doctors as rich pickings

Like other small businesses, general practices are vulnerable to being cheated because they don’t always have the resources or systems to detect security breaches. There’s also a perception that GPs can afford to pay up and that makes them attractive targets.

Here’s a look at the four scams directed at general practices and some tips to prevent them: 

1: Cybercrime 

Dr Nathan Pinskier, the chair of the RACGP Expert Committee on eHealth & Practice Systems, says while there aren’t any meaningful statistics, there’s anecdotal evidence that general practices are being targeted more frequently by cyberattacks. The
major threats include: 

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https://www.doctorportal.com.au/mjainsight/2018/19/is-health-care-ready-for-virtual-medicine/

Is health care ready for virtual medicine?

Authored by Hugo Wilcken

Issue 19 / 21 May 2018

IN AUSTRALIA, where communication between doctors is still regularly done by post and fax, medicine using virtual reality (VR) technology may seem a bit like science fiction. But according to a Perspective published in the MJA, “virtual medicine” could transform the way we treat patients in the future.

In his article, Dr Brennan Spiegel, director of health research at Cedars-Sinai Medical Center in Los Angeles, California, says that research into the health benefits of VR – where users wear goggles with interior screens that immerse them in a lifelike, three-dimensional world – has been ongoing for years, but that implementation has been stymied by the high cost of the technology. However, recent advances have driven down those costs dramatically, making it feasible for virtual medicine to enter into the medical mainstream.

Dr Spiegel focuses on three areas where virtual medicine has the most potential. The first is distraction therapy for pain. For example, VR has been found to be effective in lessening pain during bandage changes for severe burns, as well as during routine procedures such as intravenous line placements or dental procedures. Although it’s not fully understood how VR reduces pain, simple distraction is likely to be key.

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https://www.theaustralian.com.au/business/technology/opinion/family-plannings-epic-security-fail/news-story/35d54c199fbd1e66e8a7051ef0f08c33

Family Planning’s epic security fail

• Michael Connory
• The Australian
• 9:23AM May 21, 2018

It seems ANZAC Day 2018 will be remembered by 8000 New South Wales women as more than just Australia’s National Day of mourning to honour the sacrifice of the fallen in conflicts of theatre Australia has been engaged in.

For them, April 25, will have an equally different side to it. It will be remembered as the day, Family Planning NSW, failed to protect their privacy and health details.

ANZAC Day shouldn’t be thought of as a day when hackers were able to crack through Family Planning NSW’s security, it has greater prominence of elevation in our minds, but for 8000 women, it will have a different meaning now.

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http://www.abc.net.au/news/2018-05-25/mum-calls-for-hospital-records-overhaul-after-teen-suicide/9790126

Grieving mum calls for hospital records overhaul after teen daughter's suicide

ABC News Breakfast

By Patrick Wood

25 May, 2018

"Rani was a really beautiful soul who unfortunately just got caught up in some really bad situations."

Those are the words of grieving mum Kerrie Stanley, and already you know how this story ends.

It's a painful one. And familiar.

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https://www.newcastle.edu.au/newsroom/featured-news/ehealth-program-targets-young-peoples-big-six-behaviours-to-reduce-chronic-disease-risk

eHealth program targets young people’s ‘big six’ behaviours to reduce chronic disease risk

Friday, 25 May 2018

University of Newcastle researchers have collaborated on a world-first eHealth initiative aiming to target young people’s ‘big six’ behaviours to help reduce their chronic disease risk.

Associate Professor Frances Kay-Lambkin and Professor David Lubans are part of the online Health4Life Initiative, launched today at UNSW Sydney.

Led by UNSW’s Professor Maree Teesson AC, the project aims to help to help thousands of young Australian high school children reduce their chance of developing chronic diseases, including heart disease and mental health disorders, by preventing and modifying lifestyle risk behaviours that commonly emerge in adolescence.

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http://www.pulseline.com.au/health-reform/health-record-data-research-public-health-purposes

My Health Record Data for ´Research and Public Health Purposes´

PulseLine is pleased to report last week the Federal government announced that Australians who don’t want a personal electronic health record will have three months from July 16 to October 15 to opt-out of the national scheme. Under the framework, medical information would be made available to third parties for public health and research purposes from 2020 unless individuals opted out.

May 18, 2018

The Medical Technology Association of Australia (MTAA) welcomes the release of the framework to guide the secondary use of My Health Record system data. The guiding principles within the framework align with MTAA´s position to allow third parties access the data for public health and research purposes.

To inform on how data on the My Health Record system can be used for research and public health purposes while preserving privacy and security of data in the system, the Australian government developed the framework in consultation with key stakeholders.

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https://www.itnews.com.au/news/govts-high-risk-it-project-watchlist-falls-to-14-491473

Govt's high-risk IT project watchlist falls to 14

By Justin Hendry on May 23, 2018 9:30AM

DTA drops four, adds two.

The number of federal government IT projects considered high-risk by the Digital Transformation Agency has fallen to 14 after four projects were downgraded and one was cancelled.

The DTA has been keeping tabs on high-risk projects since it was tasked with identifying all government IT projects valued at more than $10 million in early 2017.

It looked to categorise projects as part of its digital investment review by confidence of delivery, with the most high-risk ones assigned an ‘engage’ classification.

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https://www.itwire.com/technology-regulation/82861-gdpr-data-protection-in-an-uncertain-and-insecure-cyber-world,-says-top-lawyer.html

GDPR: data protection in an uncertain and insecure cyber world, says top lawyer

• 21 May 2018
• Written by  Sam Varghese

The biggest change in laws governing data protection is due to take effect in the European Union on 25 May and a seasoned practitioner of the law in the UK says the most important part of the General Data Protection Regulation is the overall protection of data in what is an "uncertain and insecure cyber world".

Rashda Rana, a state counsel in the UK, told iTWire in a detailed interview that management consulting firm Oliver Wyman had estimated that the EU would reap about US$6 billion in fines from organisations that were not in compliance during the first year of the GDPR. This, despite all parties having had two years to fall in line with the regulation.

A high-profile lawyer in the UK, Rana has also had extensive experience in international commercial litigation and arbitration as counsel and arbitrator in other jurisdictions including Australia, New York, Paris, Milan, Brazil, Hong Kong, Singapore, Malaysia and China.

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https://www.theaustralian.com.au/business/technology/data-sharing-can-cost-you-a-pretty-penny/news-story/c427084ecab7a8652f215102ba78dbe5

Data sharing can cost you a pretty penny

• Tim Ebbeck
• The Australian
• 12:00AM May 22, 2018

At the end of 2017, Australia’s Actuaries Institute surveyed the chief risk officers of APRA-regulated institutions.

Among other things, the risk officers were asked to name the top three risks facing their businesses in the coming year. The results were hardly surprising given the current environment. In first place was regulatory and legislative change, followed by increased competition and therefore lower profits, and in third, cyber risks.

To be clear, I don’t think any business should see these as separate risks given the growing pressure on the heads of risk to safeguard their data. The European Union’s General Data Protection Regulation standards take effect on Friday, May 25, and any Australian firm that sells products and services in the EU, or monitors the behaviour of individuals there, will have to fall in line with these stricter privacy laws.

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https://www.itwire.com/technology-regulation/82882-some-firms-apprehensive,-others-see-opportunity-as-gdpr-date-approaches.html

Some firms apprehensive, others see opportunity as GDPR date approaches

• 22 May 2018
• Written by  Sam Varghese

With just a few days to go before the European Union's General Data Protection Regulation comes into effect, companies are scrambling to be compliant.

A great many organisations are unlikely to meet the deadline, with an estimate made by management consulting firm Oliver Wyman had estimated that the EU would reap about US$6 billion in fines from organisations that were not in compliance during the first year.

Below are some comments from companies as they try to get ready for what is the biggest change in laws governing personal data anywhere in the world.

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https://www.itwire.com/strategy/82907-microsoft-to-extend-gdpr-rights-to-users-worldwide.html

Microsoft to extend GDPR rights to users worldwide

• 23 May 2018
• Written by  Sam Varghese

Microsoft will extend the same rights that are at the heart of the European Union's General Data Protection Regulation to all its users worldwide, the company has announced.

A blog post by corporate vice-president and deputy general counsel, Julie Brill, also praised the "strong leadership by the European Union on these important issues".

Outlining Microsoft's support for the GDPR since it was first proposed in 2012, Brill said: "That’s why today we are announcing that we will extend the rights that are at the heart of GDPR to all of our consumer customers worldwide.

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https://www.smh.com.au/technology/why-you-should-read-all-those-gdpr-privacy-policy-updates-20180524-p4zh5k.html

Why you should read all those GDPR privacy policy updates

By Brian X Chen

24 May 2018 — 9:01am

You have probably noticed a flood of emails and alerts from companies in the past few weeks informing you about changes to their privacy policies.

Don't ignore them.

Yes, there is a lot of legalese to wade through. But resist the temptation to immediately delete those emails or close the alerts right away. They may contain important information about managing your digital privacy at a time when it's become clear that our online data is far from safe.

From emails to pop-ups, companies are coming up with various ways to get your 'consent' and comply with the new laws.

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https://www.theaustralian.com.au/business/technology/opinion/attention-aussie-businesses-youre-not-immune-to-gdpr/news-story/1c154077d2864f265414b44dc503e933

Attention Aussie businesses: you’re not immune to GDPR

• Scott Leader
• The Australian
• 10:07AM May 24, 2018

On a global stage, instances of data misuse and breaches are becoming all too familiar to businesses, and you needn’t look far to find examples.

Security breaches send a sobering message to any business or individual with data online; you are not immune. While digital platforms such as Facebook are moving swiftly to respond by educating their customers on revised data collection and privacy policies — and many other businesses are following suit — it’s surprising to learn how complacent the majority of individuals and businesses remain when it comes to data security.

In Australia, we’ve recently seen the Data Breach Notification Laws come into effect, with many organisations left underprepared and unaware of both their obligations to comply and the consequences for failing to do so. Sixty data breaches were reported in the first six weeks of the law coming into effect, with a majority of these breaches due to human error. As we continue to conduct business in a globalised world, we are likely to see many more policies and regulations come into force to keep us protected and these policies will increasingly cross borders.

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https://www.itnews.com.au/news/optus-fined-15m-for-forcing-hfc-customers-onto-nbn-491506

Optus fined $1.5m for forcing HFC customers onto NBN

By Ry Crozier on May 23, 2018 8:37AM

Chasing migration payment 'bounty'.

Optus has been fined $1.5 million by the federal court for trying to force customers off its HFC network and onto the NBN in a bid to fast-track migration payments from NBN Co.

The penalty amounts to around double what Optus is said to have made from the initiative, which was found to have misled customers over their rights.

The Australian Competition and Consumer Commission (ACCC) said Optus told around 14,000 of its HFC customers that their services would be disconnected - “in as little as 30 days in some cases” if they did not move to the NBN.

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https://www.itwire.com/business-technology/82911-optus-fined-$1-5-million-for-misleading-customers-over-nbn-transition.html

Optus fined $1.5 million for misleading customers over NBN transition

• 23 May 2018
• Written by  Peter Dinham

Optus has been fined $1.5 million in the Federal Court for misleading customers by telling them their services would be disconnected if they did not move from its HFC network to the National Broadband Network (NBN).

Optus told 14,000 of its customers, during the period from October 2015 to March 2017, that their internet services would be disconnected - in as little as 30 days in some cases - unless they transitioned to an NBN plan.

Optus took the action despite the fact that under the terms of its contract it could not force disconnection within the timeframe it claimed.

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https://www.itwire.com/telecoms-and-nbn/82955-nbn-ditches-100-40mbps-wireless-plans.html

NBN Co ditches 100/40Mbps wireless plans

• 25 May 2018
• Written by  Peter Dinham

National Broadband Network provider NBN Co has killed off plans to offer a 100/40Mbps fixed-wireless service, with NBN Co chief Bill Morrow confirming the decision in a Senate Estimates committee hearing.

There are widespread media reports this morning, including  by the ABC, that Morrow told the committee  yesterday “we killed it”, basing the decision on economic grounds.

According to the ABC report Morrow said consistently achieving 100mbps would cost "billions and billions of dollars" — a taxpayer spend he described as "outrageous".

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Enjoy!

David.