It’s not just the My Health Record we should be concerned about

It’s often been said, the Australian My Health Record is not a finished project. It is evolving and has, indeed, lots of potential to improve and streamline patient care. Sadly, the privacy issues that have haunted the project for years still seem to be unresolved. And when it comes to secondary use of patient data, there’s more to come from a different direction.

Back in 2013 I wrote this in a blog post about the My Health Record, then called the Personally Controlled Electronic Health Record or PCEHR:

“The PCEHR Act 2012 states that the data in the PCEHR can be used for law enforcement purposes, indemnity insurance purposes for health care providers, research, public health purposes and ‘other purposes authorised by law’. This is far from reassuring. There are many grey areas and unanswered questions. There are too many agendas. The PCEHR should first be a useful clinical tool to improve patient care.”

Five years later and there are still ambiguities about when, how and for what reason law enforcement agencies and other non-medical parties can access the national My Health Record system. This should have been crystal clear by now. Here’s is what I posted in 2015:

“(…) at the moment the information in the PCEHR may be used by the Government for data mining, law enforcement purposes and ‘other purposes authorised by law’, for up to 130 years, even after a patient or provider has opted out. (…) The legal framework should be reviewed, and any changes must be agreed upon by consumers and clinicians.”

When asked about this issue at yesterday’s Press Club AMA president Dr Tony Bartone indicated that he is prepared to push for legislative amendments to improve the confidence of Australians in the My Health Record.

I was glad to hear this. I’m all for amendments of the My Health Record legislation but at the same time the Department of Health is on a journey to get its hands on GP patient data – and this is unlikely to change.

For example, the Department of Health is preparing a new data extraction scheme, to be introduced in May 2019. To remain eligible for practice incentive payments GP clinics have to agree that de-identified patient data will be extracted from their clinical software by, perhaps, Primary Health Networks. From there the data may flow to, possibly, the Australian Institute of Health and Welfare, the organisation responsible for the secondary use of data in the My Health Record.

If this scheme goes ahead, government organisations will begin to take over data and quality control of general practice. The argument will be that it is in the interest of the health of the nation. Perhaps it’s my well-worn tin foil hat, but I have a sneaking suspicion what I will be blogging about in the years to come.

You can’t have your cake and eat it too

The Practice Incentive Program is shrinking but the government expects new quality improvement systems and general practice data.

Most GPs were underwhelmed, to say the least, when they heard about the changes (read: cuts) to the Practice Incentive Program (PIP). Cutting the funding for nursing home visits is a hard sell for the Department of Health and the Federal Health Minister.

This is the wrong message at a time when there are more elderly people with complex chronic health problems in need of appropriate medical care, preferably in the community.

I have heard about various ‘fixes’, including improvements to the Medicare Benefits Schedule (MBS) schedule (good idea) and introducing nurse practitioners (not necessarily a good idea) – but nothing has been confirmed and it all sounds a bit like policy on the run, not a planned and coordinated strategy.

Quality improvement

The scrapped incentives, including the aged care service incentive payment (SIP), will be used to set up a quality incentive payment system (QI–PIP) in GP practices. There are certainly arguments for supporting an enhanced quality improvement system in general practice, but was it the right decision to sacrifice the aged care payments?

We need practice data to review and improve patient care. I agree with the RACGP position that the development of a QI–PIP should assist general practices to undertake quality improvement activities.

However, the RACGP has also indicated that it will not support measuring performance against key performance indicators (KPIs) or so-called ‘quality indicators’ in combination with performance payments. There is just not enough evidence that this will significantly improve care in the long-run, but there is evidence of harm, including detrimental effects on the doctor–patient relationship and practitioner burnout.

Although we have had verbal assurance from the Department of Health that the new QI–PIP – to be introduced in May next year – will not be a pay-for-performance system, the longer-term plans are unclear. This has raised many concerns and it will hinder business planning for general practices.

Data deal

In return for the quality improvement payments, practices will be required to hand over their patient data to Primary Health Networks (PHNs) under the current proposal. From there, the data will flow to other agencies but – just like the My Health Record data – we have not yet heard for what purposes it will be used, and what the implications will be for individual GPs within practices. Many GPs have indicated that they are not prepared to hand over data to their PHN or the Government.

Another big issue is the eHealth Practice Incentive Payment (ePIP), which was originally introduced to strengthen practice IT systems, but is now used to make practices – often practice nurses – upload shared health summaries to the My Health Record. As we are moving to a My Health Record opt-out system later this year, the time may have come to review the ePIP and make it more meaningful for general practice.

Lastly, the practice incentive funding was introduced in the 1990s and has never been indexed. In 2016, $21 million was earmarked for removal and used to partially fund the Health Care Home trials.

It all sounds like another example of the Government wanting more for less. You can’t have your cake and eat it, too.

This article was originally published on newsGP.

Spin and misrepresentation: the toxic mix of academia and media

A good example of the toxic interaction between academia and the media is the coverage of a recent study that claimed parents did not trust their GP. The research data clearly showed Australian parents have confidence in the family doctor – but that didn’t seem to matter.

The study and the uncritical, sensationalised media reports about its bizarre conclusions received a dishonourable mention in ABC’s Media Watch. In this blog post Professor Moyez Jiwa and I examine a worrisome trend in the reporting of academic research.

With an ageing and increasingly morbid demography, health care costs are rising exponentially and, therefore, health policy is under constant scrutiny. Each previous reform is considered and, in many cases, reversed by every new government. In this context, reports that suggest any cause for public concern about the performance of health practitioners or hospitals are seized upon by the media to promote stories that will draw an audience.

In the new era of plain speaking, it is now possible to level outrageous claims against the beleaguered health industry. It is open season on doctors and their employers who may be perceived as a weakened, divided and defensive target. With each claim and counter claim the media chant “fight” and the protagonists oblige.

At the same time, the tertiary education sector is under similar pressure, having long participated in the competition for “most cited research”. The key performance indicators for academics are to grow academic outputs in peer reviewed journals. More than ever, it is a case of publish or perish, and sometimes this comes at the expense of quality.

Sensational stories

The temptation to frame the performance of health practitioners in less than flattering terms may be hard for the media to resist, and poorly designed academic research provides opportunities for them to harvest dubious results. Data to draft sensational stories are ever more readily available, as algorithms capture everything that can be measured and very little of what really matters.

As Lohr and Singer (The New York Times) state:

“… data science is a technology advance with trade-offs. It can see things as never before, but also can be a blunt instrument, missing context and nuance.

Editors of the burgeoning academic journals now vying for higher citations are also tempted to publish articles that can create a media storm and draw attention to their offering among the plethora of me-too rags, many of which derive income from advertisements targeting health practitioners.

Misrepresentation & spin

Exaggerations, simplifications and misrepresentations of research findings are often fuelled by the wording of abstracts and the use of spin in press releases from universities. This self-sustaining race to the bottom can damage health systems as well as grassroots health practitioners working in it and, worse, it may affect health outcomes.

It is time to pause for reflection. There are several elements in the eye of this perfect storm:

  • a sensitised and dissatisfied public;
  • electronic data that are ever more readily available;
  • a government with an eye on its dwindling coffers;
  • a squeezed and competitive tertiary education sector competing for ‘best’ university status based on research outputs rather than teaching excellence;
  • an academic culture encouraging quantity instead of quality of research;
  • media hungry for market share and advertising income;
  • a tolerance for sensational statements because of the trend to behave as if we all live on the set of a soap opera.

Doctors sometimes get things wrong. However, it is also very hard to draw conclusions from “data” without a great deal of the context in which the information was gathered. Data can be manipulated; it can be misleading, if not aberrant. Scientific methods can be flawed and the peer review process can be, and often is, faulty.

Journals publish what sells and the media report bad news because that’s what the public seems to buy. Finally, sound bites and 140-character sentences are now accepted as the way to communicate about complex issues. That includes issues that defy simple explanation.

Stop the rot

What is at stake, however, is our health. Every outrageous comment from an academic with a barrow to push and job to protect heaps more pressure on the very professionals who must prevent, diagnose and manage our illnesses. The results of poor research — badly designed, widely publicised, seemingly endorsed by peer review and poorly understood by a manipulated public — reduce trust.

Many academic institutions, researchers, journals and journalists work to high and ethical standards. However, our hope against the tsunami of chronic and complex conditions is the men and women who commit to the care of people, and we need to stop the rot before it sets in. The responsibility for reversing this state of affairs rests on many, but especially on the shoulders of the tertiary care sector, which needs to call out bad behaviour.

Professor Moyez Jiwa is Associate Dean of the Melbourne Clinical School at the University of Notre Dame. Dr Edwin Kruys is vice-president of the Royal Australian College of General Practitioners. This article originally appeared in MJA Insight.

Rest In Peace, BEACH

To raise new questions, new possibilities, to regard old problems from a new angle, requires creative imagination and marks real advance in science ~ Albert Einstein.

Here’s a little quiz. True or false? (Answers below)

  1. Herpes Zoster (shingles) in Australia continues to increase over time.
  2. Gastro-oesophageal reflux disease imposes a high level of societal and financial burden on the community in Australia.
  3. Of all GP consultations conducted in a language other than English, more than eighty percent are conducted by multilingual GPs who speak the patient’s language.
  4. For 15% of people living with schizophrenia in Australia, ongoing management is provided by their GP alone.

Before you scroll down to the answers, you need to know that the common source of this information is the research program BEACH, short for Bettering the Evaluation of Care in Health.

For the past eighteen years BEACH has provided us with important information to improve patient care and primary care services in Australia.

Government funding for the research program will cease which means BEACH will be closed. The government will also stop funding the Primary Health Care Research & Information Services (PCHRIS).

This has caused another shock wave through Australian general practice and primary care.

A sad day for patients, GPs and health providers.

Answers: 1 true, 2 true, 3 true, 4 false (this should be 30-40%)

Why we need to get over the Medicare Locals disappointment

Many people are still getting over the disappointment of Medicare Locals. I get that. Although some MLs were able to make a difference, too many were not. The new Primary Health Networks (PHNs) may be a different kettle of fish. One thing is for sure: they are here for the long haul.

There is an enormous opportunity for PHNs to add value where they support quality primary healthcare services to the community. For that reason the RACGP is keen to work with the new organisations. I believe there are at least three areas where grassroots support from local PHNs can make a big difference.

Working together

The first area is relationship building and teamwork. We all know there are too many silos and tribes in healthcare. On the other hand, long-term relationships positively influence knowledge exchange, understanding and trust.

Where possible, health providers should be freed up to have the option to discuss clinical care with each other. This is important all for health professionals, and even more so for those working in rural and remote areas.

We should ensure that non-clinicians do not get in the way of effective inter-collegial communication. For example, referral letters have to contain the necessary information to allow the next health provider to do their job properly, but we must avoid overly bureaucratic referral rules. A clinical override mechanism of these rules must always be available.

PHNs could assist, for example, with developing shared clinical priorities and organising site visits, breakfasts, lunches, dinners and conferences that cross disciplinary and organisational boundaries.

Continuity of care

The second area is improving continuity of care. This is not a catchphrase, but a crucial element of general practice with numerous proven long-term health benefits. Unfortunately it seems this principle is often sacrificed in new initiatives and models for the sake of short-term results, convenience or commercial interests.

It is helpful to distinguish the three types of continuity of care, as explained by Haggerty et al: informational continuity (sharing data), management continuity (sharing a consistent approach) and relational continuity (fostering an ongoing therapeutic relationship).

Electronic health records will assist with informational continuity, but not necessarily with management continuity and relational continuity.

“New models of care should not further fragment care

There is ample evidence that comprehensive, continuous care by GPs results in improved patient health outcomes and satisfaction. Continuity of care is cost-effective and reduces both elective and emergency hospital admissions.

GPs play a key role in keeping people out of hospital. It is important however that hospital avoidance projects help to build capacity, facilitate access in primary care and respect the principle of continuity of care.

New integrated models of care should carefully be evaluated to make sure they don’t do the opposite and fragment care thereby negatively impacting on health outcomes – often with the best intentions. PHNs can play a big role here.

Data exchange and communication 

A third area where PHNs should assist general practice is electronic data exchange and communication. Because of its central position in primary care, general practice is the natural collection point of clinical information. Direct, secure, electronic communication between GPs, specialists, community pharmacists and allied health providers is beneficial for optimal patient care, but remains problematic in many regions.

“Delayed information from hospitals is still one of the biggest problems

Delayed or absent correspondence from hospitals to referring doctors is still one of the biggest problems for GPs who are frequently trying to deal with returning patients without any information from the hospital.

All necessary information should be supplied in hospital discharge summaries, and it should not be left to the GP or practice staff to chase up any information from the hospital.

General practitioners need to ensure their referrals are of sufficient quality, consistent with RACGP standards, and useful for practitioners who continue the patient care in different settings of the health system. That means the referral information must be complete, accurate and timely.

Hospital referral criteria may require additional, locally agreed-on information, but extensive extra information (such as patient questionnaires) is the responsibility of the requesting institutions, and GPs should not be made responsible for its collection and supply.

There is room for improvement of communication between GPs. Getting the different healthcare computer systems to talk to each other is a big issue in many parts of the country. This is problematic as Australia has a mobile population. Low-cost software solutions such as GP2GP, used in New Zealand and the UK, could solve this.

The MyHealthRecord (formerly PCEHR) is, due to its many technical and medicolegal issues, not yet widely accepted as a reliable clinical tool and we see more alternative, locally developed e-health solutions in the near future.

In conclusion there are substantial opportunities for PHNs in supporting and adequately resourcing general practice and its interactions with other parts of the health system. To quote the National Health and Hospitals Reform Commission (NHHRC): “We believe that strengthened primary health care services in the community, building on the vital role of general practice, should be the ‘first contact’ for providing care for most health needs of Australian people.”

This article was originally published in The Medical Republic.

Warning: digital challenges ahead

Warning: digital challenges ahead

There were a few interesting tech news facts this week. I thought this one was interesting: a Dutch campaign group used a drone to deliver abortion pills to Polish women, in an attempt to highlight Poland’s restrictive laws against pregnancy terminations.

There was scary news too: a private health insurer encouraged its members to use a Facebook-owned exercise app to qualify for free cinema tickets. Not surprisingly, Facebook was entitled to disclose all information shared via the app, including personal identity information, to its affiliates.

But there was also this: Telstra has launched its ReadyCare telehealth service. For those willing to pay $76, a doctor on the other end of the phone or video link is ready to care for you. No need to visit a GP or emergency department.

The telecom provider will offer the service to other parties like aged-care facilities and health insurance funds. Telstra is aiming for a $1 billion annual revenue.

Digital revolution

Digital developments increasingly create new opportunities, challenges and risks, but we have yet to find ways to incorporate the new technologies in our existing healthcare system.

In an interview in the Weekend Australian Magazine Google Australia boss Maile Carnegie warned that the digital revolution has only just started and that Australia is not ready for the digital challenges ahead.

Carnegie said that 99% of the internet’s uses have yet to be discovered and although Australia is the 12th largest economy in the world, it ranks only 17th on the Global Innovation Index.

She said that Australia has become a world expert at risk-minimisation and rule-making. Unfortunately this seems to slow down innovation.

“We are either going to put in place the incentives and the enablers to create the next version of Australia as a best-in-class innovation country or we’re not,” she said. “And I think it’s going to be a very stark choice that we have to make as a community.”

Who’s taking the lead?

In the last ten years we have seen major progress in for example mobile technology, but my day-to-day work hasn’t changed much. Healthcare has difficulty harnessing the benefits of the digital revolution.

Is the industry leading the way and letting governments, software developers and other parties know what is required? Do we have industry-wide think tanks to prepare for the near future? Have we listened to what our patients need and expect from us in the 21st century? And will Medicare eventually reimburse services delivered via modern technologies, such as pioneered by Telstra?

Lots of questions. Who has the answers?

Follow me on Twitter: @EdwinKruysDisclaimer and disclosure notice.

Why doctors still can’t email your health record

Blogging on Demand

In the ‘Blogging on Demand’ series you get to choose the topic. If you have a great idea you want the world to know about, feel free to contact me. Northern NSW GP and technophile Dr David Guest feels that one particular low-cost health-IT solution from New Zealand, called GP2GP, is worthy of more discussion and would make a big difference in Australia.

I admit it’s odd: Every time a new patient presents, the receptionist will see to it that a huge pile of paper notes ends up on my desk, often held together by paperclips or elastic bands.

I usually move the pile over to one side and look at it for a couple of days to see if the documents will disappear which, so far, hasn’t happened. Then, during a lunch break, I bite the bullet and trawl through the record, under while entering the data into the computer: allergies, medications, history, family history etc.

Important documents are scanned and shredded. When a patient at any stage decides to leave the practice, the receptionist prints the record and faxes it to the next GP. When it’s a large record she will make sure it’s held firmly together by paperclips or an elastic band before it goes to the post office in a big envelope.

Getting computers to solve this problem for us is an issue in Australia, because our IT systems don’t communicate. But in New Zealand and the UK they have found a way to transfer health records electronically. It’s called e-mail. Well, not really, but there are similarities.

Simply put, GP2GP is a software application that securely transfers an electronic health record from one practice to another, and automatically stores information in the relevant sections of a patient’s record.

A no-brainer

Dr Guest: “Although I support the PCEHR one cannot help but feel frustrated by the slow pace of change and the limited functionality it provides. In recent times I have become much more interested in simple low-cost achievable IT solutions.”

“It would be great to emulate the UK and NZ ability to transfer medical records from one practice to another. Auto-populating medical lists, health summaries, allergies and vaccinations will save time and reduce medical errors. New Zealand has reportedly done this for less than a million dollars. Given the lack of progress in Australian health IT, it seems a no-brainer to replicate this.”

“Patients have a reasonable expectation and entitlement that information can be easily transferred to their new practice

RACGP e-health spokesperson Dr Nathan Pinskier says: “Australians legitimately change their GP and general practice for a number of reasons, for example because their GP retires, practices merge or people relocate. Approximately 10% of Australians move home each year. Patients have a reasonable expectation and entitlement that personal healthcare information held by their current general practice can be easily transferred to their new practice.”

“Transferring data via a physical medium, like discs and USBs, is problematic as they only work well between compatible systems. The PCEHR allows for the sharing of some clinical documents via a point to share environment, however this requires the patient and both the old and the new general practices to be registered with the PCEHR.”

“Furthermore the documents that may be available for transfer may not always be the information required by the new general practitioner, as documents can be restricted or removed by the consumer. The PCEHR is after all, by definition, the consumer’s personally controlled healthcare record.”

Dr Guest: “The elements enabling this transfer of data already exist in Australian electronic health records software. Most products can export their data in machine readable formats such as XML. They can also import an XML-file produced by their own software from other practices. There needs to be agreement on a standard structure for the XML-data and this is what NZ and the UK have achieved. We should use their format and then enforce it.”

The benefits 

The process of posting paper records and manually entering data is inefficient. Patients First, the New Zealand not-for-profit organisation responsible for introducing GP2GP, states on its website: “This results in a significant safety risk each and every time a person changes their GP.”

Indeed, when doctors or staff enter data manually, there is the potential to make mistakes. 

“Having this knowledge at their fingertips will lead to improved clinical decision-making

According to Patients First, there are many benefits:

“With GP2GP, general practitioners will have detailed knowledge of their new patient’s current medication, allergies, current problems and past medical history. Having this knowledge at their fingertips will lead to improved clinical decision-making so that the right care can be provided at the right place and at the right time thus reducing the risk to patient safety during the handover of care.”

Lastly, a benefit that has been claimed is a reduction in the number of duplicate tests.

GP2GP benefits
Image: Clinicians will have immediate access to their patients’ Electronic Health Records. This will ensure genuine continuity of care. It will also mean improved safety. There will be fewer transcribing errors because the need to key in information from paper records will be massively reduced. Clinicians and staff will benefit from the time savings. Source: HSCIC.

Potential issues

“The major issue is developing an agreed set of standards for both the content and technical requirements for point to point transfer that can be implemented by any vendor,” says Dr Pinskier. “The RACGP Optimus project has made significant progress in relation to defining the content, however there is no national program to address and fund the technical transfer work.”

Some have argued that there is no business case for software vendors to develop GP2GP in Australia. In New Zealand and the UK the project received Government funding.

The reduction in workload may not be as substantial as we would like. GP Emma Dunning pointed out in New Zealand Doctor Magazine that doctors still need to review the imported data:

“Where I used to be demoralised by the huge pile of paper notes awaiting my attention, I am now demoralised by the stream of tasks on my taskbar, in red, saying ‘GP2GP notes imported, review’. My lightbulb may never be green again!”

A 2011 pilot study from the UK found that the record transfer system was valued, but that there were issues with the quality of the records, which required significant resources to rectify. The New Zealand version also experienced teething problems.

Urgent national priority

Nevertheless, the adoption rate in the UK is 62% (2013), and in New Zealand 93% (2014) with 30,000 transferred records per month.

“I think it is excellent and it saves a lot of time

GP Dr Richard Medlicott, who is a member of several e-health task forces in New Zealand, is content: “Personally I think it is excellent and it saves a lot of time. It’s even better since we increased the file limit from 5 MB to 20 MB. I can’t see any reason you wouldn’t use it.”

According to Dr Pinskier making our systems talk to each other has become an urgent matter: “To support efficient healthcare delivery and continuity of care, we need an agreed mechanism for the safe and efficient transfer of clinical information. One would argue that this is now an urgent national priority.”

It seems GP2GP could be a cost-efficient improvement in Australian healthcare, but the question will be: who pays?

Thanks to Dr David Guest for the topic suggestion.

Follow me on Twitter: @EdwinKruys.

Disclaimer and disclosure notice.

Is the new eRx electronic prescription service beneficial to consumers?

Is the new eRx electronic prescription service beneficial to consumers?
Image: pixabay.com

About ten years ago I did a locum in an innovative GP practice in The Netherlands. When prescribing medications, the computer system allowed me to either print the script and hand it to my patient, or send it electronically to the pharmacy. Consumers who elected the second option, were able to collect their medications at the pharmacy twenty minutes later.

I’m not sure how secure the system was, but it was easy to use, saved a lot of paper, and prevented lost scripts and medication errors.

ePrescribing in Australia

Here in Australia doctors are printing or handwriting scripts. This month however I noticed a little QR code in the top right corner after printing a script. It took me a while to figure out what it was for: Patients can scan this code with a mobile device, submit the information electronically to the pharmacy of their choice and pick the script up on a preferred day and time.

eRx express
Source: erxexpress.com.au

The app, developed by the Fred IT Group, is called eRx Express. It can be downloaded for free on mobile devices. It seems that the benefit for health consumers is reduced waiting time at the pharmacy – which is great, especially if people have already been waiting to see their doctor.

I also have a few reservations…

First of all, consumers have to scan and send information via their smart phones, and they still need to bring in the paper script when collecting their medicines at the pharmacy. So it involves a few more steps and we’re not yet saving trees.

Second, as always, I would like to know what happens with the data during and after scanning, transmission over the internet and on the servers of the Fred IT Group and others. Is the information sold or disclosed to third parties?

It would be good if consumer details and their prescription history would not be collected or used for other purposes. But usually, when something is free, we become the product. In other words, there is often a price to pay with regards to our personal data.

The small print

So, after a little search I found this information in the patient terms and conditions and the privacy policy:

You agree that we may disclose your de-identified prescription data to selected third parties for the research and marketing purposes of those third parties.

We do not warrant (…) that any data transmissions between you and us will be secure and that any data you send us shall at all times remain secure.

We reserve the right to (…) charge for the App or service provided to you at any time and for any reason (whether stated or not).

Conclusion

As long as private or governmental organisations want control of our health data for other purposes than patient care, eHealth initiatives will not take off. Of course health consumers are free to use this service, but at the moment the benefits do not seem to outweigh the risks.