Welcome to the ‘open era’ of health information

“When I graduated, my medical notes were an aide-memoire to help me treat my patients. When I joined a group practice, I realised that my notes helped my colleagues and me treat our patients. Since computerisation, my notes and health summaries have helped me to write better referrals so that colleagues outside my practice can assist me in treating patients more effectively. Now that I can share an up-to-date health summary on MyHR, I realise that my notes can help my patients to achieve better outcomes from the health system, even when I am not directly involved.”

Dr Steve Hambleton, AJGP

Five years ago, in 2014, I wrote about OpenNotes because I thought it was a new and fascinating concept. I soon discovered that giving patients access to health records triggered strong emotional reactions: patients loved it and many doctors thought it was one of the scariest ideas ever.

Fast forward to 2019, and about 90% of the Australian population has access to the national My Health Record (MyHR). According to the Australian Digital health Agency over 80% of general practices and pharmacies, 75% of public hospitals, and 64% of private hospitals have registered.

It took a while, but Australia has sorted out most of the digital teething problems. A large part of what doctors do every day – from writing prescriptions to requesting tests – is now recorded and can be viewed by patients, other health professionals and researchers.

This is only the beginning. Secure messaging is one of the next big topics on Australia’s eHealth agenda. By 2022 patients and healthcare providers can communicate and share more health data than ever before via interoperable, secure digital channels.

Nobody is expecting this to be an easy journey, but I’m looking forward to the destination! Welcome to the ‘open era’ of health information.

WANTED: shared vision for primary care

“I do know that when primary care doesn’t connect, collaborate and work together – patients see and feel that disconnection. And I have a feeling that those working in primary care see and feel it too.

Belinda MacLeod-Smith, health consumer (BridgeBuilders.vision)

Labor’s health spokeswoman Catherine King announced that her party will create a permanent health reform commission if it wins the federal election. I thought this sounds like a step in the right direction as long-term planning of health reform is much needed in Australia.

On the other hand, there have been many government committees, task forces, reviews and reports that haven’t made a dent in the primary care landscape.

If only we could put together some of the ideas coming from Australia’s health and consumer groups. These organisations, often working at the coal face of primary care, have an excellent understanding of the urgent needs and requirements. 

I was pleased to see that some of this year’s pre-budget submissions by primary care organisations contain similar ideas. For example, the pre-budget submissions from AMA, ACRRM and RACGP all argue for funded telehealth services.

As expected, there is a strong push for adequate patient Medicare rebates and reduced patient out-of-pocket costs. The general practice profession also believes that spending more quality time with patients should be encouraged through better remuneration of longer consultations. 

One of the main themes is improving care for people living with chronic and complex conditions. The Australian Medical Association is proposing a chronic disease quarterly care coordination payment to GPs to support team-based care. 

The Royal Australian College of General Practitioners is advocating for comprehensive reform that includes blended funding, based on the Vision for general practice and a sustainable healthcare system.

The Pharmaceutical Society of Australia wants pharmacists in residential aged care facilities. The Consumers Health Forum argues for an Australian Co-Creating Health initiative to support people with chronic conditions to actively manage their own health.

Rural doctors, RDAA and ACRRM, are asking for more junior doctor training places in rural and remote settings and a move to the rollout phase of the National Rural Generalist Pathway.

This is just a selection of some of the budget submissions. What struck me is that there is a lot of merit in many of the proposals. They are often not mutually exclusive.

Unfortunately, most budget submissions seem to end up in a large pile on the minister’s desk. Many great ideas never see the light of day, because there is no sector-driven vision or strategy.

Is this the best we can do? I believe it is time to work towards a shared vision for primary care. Why not start by looking at what the various organisations and groups have in common?

A valuable lesson in ‘less is more’ from a Dutch patient

A few weeks ago one of my patients, Eva, asked about the treatment of urinary tract infections. In the course of our conversation I mentioned that in Australia antibiotics are recommended.

Eva had symptoms of a bladder infection and was after a diagnosis, but preferred not to take antibiotics. She was Dutch and said that cystitis in the Netherlands is often initially managed without antibiotics.

We decided to look it up (it has been a while since I practised in my birth country) and I googled the website of the Dutch College of General Practitioners. I had a feeling Eva was correct, as it was Dutch research that concluded middle ear infections can often be treated without antibiotics. The Netherlands, Norway and Iceland also top the charts when it comes to lowest rates of resistance to antibiotics.

Since 1989 the Dutch GP College has developed about one hundred independent, evidence-based guidelines for conditions managed in primary care. It didn’t take long to find the guideline on urinary tract infections, published in 2013.

Indeed, the document stated (freely translated from Dutch):

“Cystitis in healthy, non-pregnant women can be self-limiting. Leaving cystitis untreated seldom leads to bacterial tissue invasion.

But what is the risk of complications, like a kidney infection, I wanted to know after reading the advice to Eva (who didn’t look surprised at all).

“Apparently it is not very high, doctor,” she answered.

In the endnotes of the guideline I found a reference to two studies, indicating that pyelonephritis in non-immunocompromised, healthy women is rare, with no statistically significant difference in the occurrence of pyelonephritis between antibiotic treatment groups (0 tot 0,15%) and placebo groups (0,4 tot 2,6%).

The document further contained instructions about what to discuss with patients:

“The GP discusses the option of watchful waiting (drinking plenty of fluids and painkillers if needed) and delayed prescribing. The patient can then decide to start antibiotics if symptoms persist or worsen.

Some evidence indicates that, without treatment, 25–42% of uncomplicated urinary tract infections in women resolve spontaneously.

Eva was right about the Dutch approach. In healthy people with uncomplicated infections the Dutch College of GPs recommends consideration of no antibiotics.

Are the Dutch unhappy about a health system that often advises against antibiotics? My patient certainly didn’t seem to be. She was relieved when we decided not to treat her urinary tract infection with antibiotics.

The answer appears to be no. For years the Netherlands has led the Euro Health Consumer Index, which measures patient satisfaction with healthcare systems in Europe – including outcomes, access to healthcare and medications.

On the Choosing Wisely Australia website I found one sentence on the topic: “The management of urinary tract infections (UTIs) is changing, although it can still include antibiotics.” Lack of systematically reviewed placebo randomised trials seems to be a key factor for Australia.

Eva’s urinary tract infection cleared up without antibiotics.

I recommend sensible use of local clinical practice guidelines and treatment recommendations. Always seek timely advice from your doctor regarding any medical condition you may have, including urinary tract infections. For privacy reasons the name and details of the patient have been altered.

Integrated health services, what do you mean?

It has been described as the holy grail of healthcare: the patient at the centre and the care team working seamlessly together, no matter where the team members are located, what tribe they belong to or who the paymaster is.

Integration has been talked about for many years. The fact that it’s high on the current political agenda means that there’s still a lot to wish for. Although we have high quality healthcare services, our patients tell us that their journey through the system is everything but smooth. Most health professionals are painfully aware of the shortcomings in the the system.

What is integration?

So what do we mean when we talk about integration? Co-location of health professionals? Team meetings between doctors, nurses and allied health professionals? Hospital departments talking to each other? Communication between GPs and specialists? Working across sectors? Packaging preventative and curative services? Patient participation? One electronic health record? A shared management and funding system?

Integrating health services means different things to different people. For that reason the WHO proposes the following definition:

“Integrated service delivery is the organisation and management of health services so that people get the care they need, when they need it, in ways that are user-friendly, achieve the desired results and provide value for money.

Integration is a means to an end, not an end in itself. Sharing resources may provide cost savings but, says the WHO, integration is not a cure for inadequate resources. Obviously, integrating services doesn’t automatically result in better quality. It’s also worthwhile noting that co-locating services does not equal integration.

There is a difference between integration from a consumer point of view, which often implies seamless access to services, and professional integration, which is achieved through mixing skills and better collaboration. These two types of integration don’t necessarily go hand in hand.

So it is useful to ask: what problem are we trying to solve? Are we trying to improve the patient journey through the health system? Do we want to support health professionals to deliver better care? Or is the main driver government concerns about costs?

How to achieve it?

One thing is certain: we must fight fragmentation. This is challenging as we are seeing a wave of commercially driven, disruptive services appearing in the healthcare sector. These solutions may be attractive to consumers because they are convenient, but they usually don’t contribute to a better or more integrated health system.

Unfortunately the evidence around integration is limited, but the authors of this MJA article are suggesting a way forward. They have looked at international health reform initiatives improving integration between community and acute care delivery, and they found that the following 10 governance elements are essential to support integration:

  1. Joint planning. Governance arrangements included formal agreements such as memoranda of understanding
  2. Integrated information communication technologies
  3. Effective change management, requiring a shared vision
  4. Shared clinical priorities, including the use of multidisciplinary clinician networks, a team-based approach and pathways across the continuum to optimise care
  5. Aligning incentives to support the clinical integration strategy, includes pooling multiple funding streams and creating equitable incentive structures
  6. Providing care across organisations for a geographical population, required a form of enrolment, maximised patient accessibility and minimised duplication
  7. Use of data as a measurement tool across the continuum for quality improvement and redesign. This requires agreement to share relevant data
  8. Professional development supporting joint working, allowed alignment of differing cultures and agreement on clinical guidelines
  9. An identified need for consumer/patient engagement, achieved by encouraging community participation at multiple governance levels
  10. The need for adequate resources to support innovation to allow adaptation of evidence into care delivery.

Major paradigm shift

The first thing we need is a shared vision. A major paradigm shift towards more integration requires motivated and engaged stakeholders and champions, a shared sense of purpose and a culture of trust. This should be established before embarking on a new journey. We must avoid making the same mistakes that have caused so much havoc in projects like the PCEHR.

It will be a challenge to get health professionals to focus more on coordination instead of daily care delivery. An essential step here is to increase capacity. The last thing we need is an overloaded primary care sector such as in the UK. The RACGP is suggesting an overhaul of primary care funding to faciliate integration and coordination. Similar changes will be required to free up hospital doctors to e.g. discuss patient cases with primary care providers.

The big question is: who will take the lead? It is likely that a lot of  work will happen at a local level and primary health networks could play a crucial role here. A shared agenda, clear goals and genuine stakeholder involvement are keys to success.

The Danish health IT solution: small-scale brilliance

When his wife attended a conference in Copenhagen, Adelaide GP and RACGP board member Dr Daniel Byrne took the opportunity to find out why Denmark is one of the world leaders in the use of e-health.

One of Australia’s problems is the reliance on paper documents. For example, almost every healthcare organisation designs their own referral forms and we still fax and post a lot of documents. In Denmark a ‘one-letter solution’ was introduced years ago: one electronic form used by thousands of health organisations.

“No patient ever left the surgery with any paper,” said Dr Byrne. “It seemed very well organised with a great e-health network. No faxes were used as everything is connected via secure networks – prescriptions, referrals, pathology and radiology ordering, even email consults.”

E-mail consultations

Dr Daniel Byrne
Dr Daniel Byrne about the Danish e-health system: “The live medication list was too good to be true.” Image: Linkedin.

There are no incentives for Australian GPs to communicate with their patients by phone and email, whereas Danish GPs are paid to to take calls from patients every morning. They are also paid for e-mail communications with patients.

Dr Byrne: “The email consults are excellent. The patient has to send their email via a government secure email system. Every citizen in Denmark has a government email address – maybe similar to our MyGov system.”

“Only simple non urgent requests are done by email. I think the GP has three days to answer. The payment was around $10 per email for the GP and this seemed to work fine. If there is a bit of to and fro with a patient via email the GP asks the patient to come in for a proper consult.”

Shared medication record

National databases exist for medications and laboratory results. Dr Byrne: “The live medication list was too good to be true! Click on the medication list in any GP software or hospital system and within 2-3 seconds up pops the same real-time live medication list.”

“The GP I was with could see the prednisolone dosing schedule for a patient with polymyalgia from hospital and then just take over future prescriptions. Everyone is working off the same list. I am sure it is not perfect but a pretty good starting point compared to our nothing.”

It appears the system encourages continuity of care. After hours medical services use the same computer system as GPs and hospital discharge summaries arrive electronically at the GP surgery within two days. Scripts are sent electronically to the patient’s preferred pharmacy.

Patient access

Compared to many other European countries Denmark has a high public satisfaction with the health care system.

An interesting aspect is the access patients have to the system. Via the Danish National Health Portal patients can access hospital discharge information, laboratory results, the live medication list and waiting list information.

Patients can electronically schedule GP appointments, send e-mails to their GP and renew prescriptions. They can also see who has accessed their health records.

All doctors are allowed to access the health records, but other health professionals require patient consent first. Danish law does not allow the interconnection of IT systems across sectors, such as health and taxation.

Miles ahead

With a population of 5.6 million Denmark is one of the smaller European countries, which may make it easier to roll out e-health. The system is not perfect and there are always issues, such as interoperability.

Overall Denmark seems to be miles ahead of many other countries, including Australia where we still rely heavily on the fax machine. Dr Byrne: “In Denmark it is illegal to fax anything as the system works on a national ID number that has to be kept secure.”

The video that made doctors cry

The first video of a national awareness campaign by the Royal Australian College of General Practitioners (RACGP) highlighting the value of general practice, has brought tears to the eyes of many GPs.

The clip starts in the seventies, when home pregnancy tests were not widely available. The young, fresh GP is visibly happy to bring the good news to a couple in his consulting room (“You have a baby on the way”). There is no computer in the room, lots of paperwork on the doctor’s desk, and we see furniture and filing cabinets from times gone by.

As we follow the couple and the doctor over the years, the consulting room changes too. If you look closely (admittedly this may be of interest to medicos only) you will see a beautiful old mercury sphygmomanometer on the trolley. Computers begin to appear on the desk. Time flies in the video; in a matter of seconds the GP and his patients age and new family members enter the consulting room.

The lifelong journey

Towards the end one of the children has become a mother. The GP, now with grey hair, says to her “we have quite the journey ahead of us,” as he gets up from his chair with the visible difficulty of an older man.

Indeed, sharing the journey through life is one of the aspects that sets the GP apart from other disciplines. And just like in the video we’re there for the minor ailments – the nits – as well as the big and often emotional life events, such as a cancer diagnosis or the death of a spouse. I think the video brings this message across very well and that may be why it triggers an emotional response.

But the video also contains another message. Observant viewers will have noticed that the GP has two framed certificates hanging on the wall at the beginning of the clip and, as time moves on, more certificates follow.

The importance of education and learning gained through fellowship of the RACGP is a key message of the campaign. A voiceover at the end tells us: “The good GP is with the Royal Australian College of General Practitioners, because the good GP never stops learning.”

Criticism

There is of course, as always, criticism. Some have commented that telling patients they have to do something may not be the most effective way to encourage change – like smoking cessation. Good GPs have a conversation with their patients. Others have mentioned the video doesn’t reflect our multicultural society or the gender diversity in medicine.

Fellows of the Australian College of Rural and Remote Medicine (ACRRM) may rightly say that they too are good GPs. And lastly, there seems to be a disconnect between the clip and the message about lifelong-learning at the end. It may be easier to brand general practice than a GP college.

I believe some of the criticism will be addressed in future campaign material – but it is also good not to lose sight of the bigger picture. The campaign aims to improve the recognition of GPs and general practice. If it’s as successful as the RACGP’s You’ve been targeted campaign, the promotion of general practice will benefit all those working in primary care, and more importantly, our patients.

Strong general practice

Personally I hope the campaign opens the eyes of some politicians. Australians rate their doctors in the top-3 of most honest and trusted professions and they visit the GP on average 5-6 times per year. GPs are good value when it comes to spending tax payers money: The average GP consultation costs $50, compared to for example $400-600 per service in a hospital emergency department.

It is a good idea to reduce waste and duplication in healthcare, but poorly targeted cuts and freezes will do more harm than good to the health of Australians. We must also reduce the amount of red tape and stay away from more bureaucracy, like NHS-style revalidation – so doctors can look after their patients instead.

The success of a campaign depends on the people who support it. In a video message directed at doctors RACGP president Dr Frank Jones said: “Talk to your patients and key people in your community about the importance of general practice. Our training and the accreditation standards are why the good GP never stops learning.”

The video touched the hearts of many GPs, but in the end it’s the impact on patients that matters most. I hope its positivity will be contagious.

5 questions to ask your doctor (before you get any test or treatment)

The National Prescribing Service (NPS) has made an interesting list of 5 questions patients should ask their doctors. The aim is to be well informed about the benefits and potential harm before you undergo medical tests, treatments, and procedures.

I think the list is useful and I’d encourage people to ask these questions. At the same time I suspect I will not be able to answer all the questions. For example, I don’t know the costs of all available tests, and the exact risks of certain interventions is something I may have to look up.

I have been told NPS is planning to develop resources for doctors so they can better help their patients with these queries. This would indeed be helpful. But in the meantime, feel free to ask! I hope it will lead to less unnecessary interventions.

Here are the 5 questions to ask your doctor before you get any test, treatment, or procedure:

5 questions NPS

Source: Choosing Wisely Australia

Why the ‘You’ve been targeted’ campaign against the co-payment was so successful

“We don’t have to engage in grand, heroic actions to participate in the process of change. Small acts, when multiplied by millions of people, can transform the world.” ~ Howard Zinn

Not many people know that the main message of one of the most successful campaigns of the Royal Australian College of General Practitioners (RACGP) against government policy was largely inspired by one patient.

At the height of all the commotion about the co-payments, patient advocate Ms Jen Morris posted a message on Twitter suggesting a different response to the government proposals: Instead of focusing the campaign on doctors, she said, we should be focusing on the consequences of the policy for patients.

We’re sorry

I used her simple but powerful message in a leaflet (see image). It said:

We’re sorry to hear your rebate will be slashed. (…) It’s not that we haven’t tried, but the Government doesn’t seem to listen to GPs. They may listen to you.”

We are sorry
The original design inspired by Ms Jen Morris.

Not long after I posted it on my blog and social media channels, the RACGP President contacted me. He wanted to include the message in a national campaign. I thought it was great that the RACGP was using social media and that they took notice of what was being said. Not long after, the You’ve been targeted campaign was unleashed by the college. The message was similar to the original, inspired by Jen Morris:

“Your rebate from Medicare will be CUT (…). We have been vocal with Government but it’s falling on deaf ears. They haven’t listened to us but they will listen to you.”

The RACGP had listened to patients and many of their members who wanted a patient-focused campaign. The You’ve been targeted approach showed that every GP surgery in Australia can be turned into a grassroots campaign office if necessary. After other groups, including the Consumers Health Forum and the AMA, increased pressure on the government, the co-payment plan was dropped.

I spoke to Ms Jen Morris and RACGP President Dr Frank Jones about the role of patient input, the use of social media and what we can learn from the remarkable campaign – as there is still a lot of work to do (for example to reverse the freeze on indexation of Medicare rebates)

A pay cut for wealthy doctors?

Morris: “I opposed the co-payment, but was concerned that the original approach adopted by doctors’ organisations misjudged the public’s values, as well as public perceptions of doctors’ wealth and social position. In the initial stages of the campaign against the proposed co-payment, doctors’ organisations, and thus media coverage, were framing it as a pay cut for doctors.”

“Misframing the situation like this made it harder for those of us opposing the changes to explain the various proposals, including Medicare rebate freezes, in a way which the public could understand. It also made it easier for the public to write the problem off as not their concern, but rather a pseudo ‘workplace relations’ issue between doctors and Medicare.”

“At the time, the public were reeling from a budget widely touted as disproportionately impacting the most vulnerable and disadvantaged people. In a social context of widespread public perception that doctors of all stripes are wealthy. So there was little public sympathy when the doctors’ lobby cried foul because the government was trying to ‘cut their pay’. There was a sense that as well-off professionals, GPs should take their fair share of the fiscal blows and ‘cop it on the chin’.”

“The government played perfectly into the combination of these two problems. By later touting the co-payment as ‘optional’, they painted GPs who chose to charge it as opting to squeeze patients rather than take a pay cut.”

‘Extremely poor policy’

Jones: “The RACGP repeatedly raised its concerns with government over many months regarding the impact of a co-payment on the general practice profession and its patients. As GPs we have an obligation to speak up and oppose any policy that will impact on our patient’s access to quality healthcare. We know that poor health policy drastically affects the ability of GPs to deliver quality patient healthcare, and this was extremely poor health policy.”

“When it became apparent the RACGP’s concerns were not gaining the traction required to influence change, we decided it was time to increase pressure. While advocacy has always been a major component of the RACGP’s work, it has recently taken a more public, contemporary approach to these efforts.”

“In the case of You’ve been targeted, this meant ensuring patients were also included in the conversation and encouraged to stand united with GPs to protect primary healthcare in Australia. We collectively see hundreds of thousands of patients a day and knew that a campaign bringing GPs and patients together would present a strong united voice.”

You've been targeted
The succesful RACGP You’ve been targeted campaign

The strength of the campaign

Morris: “Like most public policy debates, successful campaigning against the co-payment was contingent on securing public support in a political PR contest, which means getting the public on side. I believed that re-framing the issue around patient interests was the key to changing public perceptions, and winning the PR battle.”

Jones: “The RACGP took notice of what patients were saying about the co-payment and listened to our members who were telling us they wanted a campaign that focused on how their patients would be impacted. This is what led to the creation of You’ve been targeted.”

“The response to the RACGP’s change.org online petition was a big step for the campaign, with more than 44,800 signatures obtained in less than one week. While the campaign gained momentum through protest posters, use of the social media hashtag and sending letters to MPs and this allowed for concerns to be heard, the online petition was a collective demonstration of the sheer extent of those concerns.”

“A campaign’s strength is intrinsically connected to how powerfully it resonates with its audience and You’ve been targeted hit all the right buttons in this respect campaigning on an issue that affected every single Australian, young and old.”

Novel approaches

Morris: “If doctors and patients can capitalise on common ground and present a united front from the outset, the weight of political force will rest with us.”

Jones: “In terms of closer collaboration on advocacy campaigns, the RACGP feels there will be significant opportunity to work with health consumer organisations, given the mutual priorities of better supporting patient care.”

“The RACGP has already partnered with consumer organisations including the Consumers Health Forum (CHF) with whom it produced a number of joint statements. Most recently, the RACGP and CHF partnered in a joint submission regarding the deregulation of pharmacy locations and ownership.”

“The RACGP has consumer representatives on its key committees and boards. We have a history of working with consumer groups on important issues, and will continue to do so moving forward.”

“In light of the RACGP’s recent campaign successes, we will increasingly use social media as a platform to act as a voice for Australian GPs and their patients. Social media is new age media and the RACGP is committed to keeping pace with technological advances to ensure its members are effectively represented.”

The e-health challenge: an interview with NEHTA Chair Dr Steve Hambleton

In the 2015 Budget the Federal Government has allocated significant funding to improve the electronic health record system for all Australians. The personally controlled e-health record gives patients a lot of control, but many healthcare providers are still concerned about the medicolegal risks embedded in the system.

I had the privilege to speak with Dr Steve Hambleton, former AMA president and Chair of the National E-Health Transition Authority (NEHTA), about some of the concerns voiced by doctors and consumers.

It appears there are various sticks and carrots in the pipeline to get more healthcare providers on board, but there is no sign that for example the heavy-handed PCEHR Participation Contract for providers will be changed.

The good news is that Dr Hambleton expects the current national infrastructure will help other providers and products – different to the PCEHR – to emerge in the near future.

Here is the transcript of our conversation:

Dr Steve Hambleton
Chairman of the NEHTA-Board Dr Steve Hambleton. Image: LinkedIn

Are you enjoying your role within NEHTA?

“I think I am now!”

I assume you are happy with the allocated funding of $485 million for e-health over 4 years in the latest budget?

“Yes absolutely. I think it does two things: It restarts the momentum of e-health in this country, and the Federal Government has now sent a signal to the State Governments and the e-health community saying: ‘we are serious about e-health and we want to get an outcome; we want to get some returns.’ If you think about it, we’ve really had no momentum since about September 2013.”

The budget indicated that NEHTA will cease to exist as suggested in the Royle report – what will your role be after the transition?

“I hope to be able to contribute in some way, but there are no announcements about it as yet. NEHTA can now complete its task of setting up the infrastructure and I guess the Australian Commission for E-Health, if it goes forward as proposed, can take it to the next step of more meaningful and better use of e-health.”

What is the difference between NEHTA and the proposed Australian Commission for E-Health?

“I think the main difference will be in the governance, not so much the strategic direction. We recommended in the Royle review to put users and people who can meaningful influence the direction of e-health on the governance board, so the influence is there at the highest level.”

According to the PCEHR Act 2012 the PCEHR has four purposes: to help overcome fragmentation of health information, improve the availability and quality of health information, reduce the occurrence of adverse medical events and the duplication of treatment, and to improve the coordination and quality of healthcare provided to consumers by different healthcare providers.

It appears however there are least 5 other purposes of the PCEHR spread out throughout the Act:

  1. Law enforcement purposes
  2. Health provider indemnity insurance cover purposes
  3. Research
  4. Public health purposes
  5. Other purposes authorised by law 

Especially the last one seems a catch-all category. There seems to be a lack of information about what happens with our patients’ health information in the PCEHR. What are your thoughts on this?

“We should probably engage with the minister now to gain a better understanding of where they want to go with e-health, but if we simply mechanise what we’re doing with paper records we really can’t reach the benefits of electronic health. We have to analyse the data we’re creating and use that to improve care and understand outcomes.”

“For example, when a new drug is released into the community we want to know: does it actually deliver the same outcomes as when the drug trials were run? We need to make sure that the healthcare we are providing does make a difference and does get an outcome, so we do need to analyse the data. Whichever way we go, the performance of the system is going to face more transparency as time goes on, and I think the profession is beginning to understand that.”

“We need to analyse individually what we do in our practices; all the colleges are now saying: ‘as part of continuous professional development we want you to reflect on your activities within your practice and show us how you modify your activities to get a better outcome.’ That will apply to GPs, specialists, hospitals, and the systems need to be analysed as well. We can’t do that unless we have a common dataset and I think that’s what e-health gives us.”

We need more information about what the government will and won’t do with the data because the PCEHR act 2012 seems to allow for almost anything. 

“I think that’s probably a question we should put to the minister. We need to hear what’s in their heads. I don’t have any knowledge about what’s in the government’s mind.”

The data is kept by the government for 130 years, is that right?

“My understanding is that’s correct yes.”

Do you think patients are aware of this?

“I can’t answer that question, I couldn’t tell you what patients are thinking but certainly from the day-to-day interaction with patients it’s surprising to see how many people think we’re already sharing information about them and use that to try and improve the situation.”

Even if healthcare organisations or practices cancel the PCEHR Participation Agreement, 7 of the 14 clauses contain paragraphs that survive termination, including liability. Although practices may have signed up to access the incentive payments, they may be concerned about the fact that the contract has clauses that, once signed, will be perpetually binding. It makes sense to adjust the contract to entice clinicians to participate, doesn’t it?

“My comment would be that we’re bound by good medical practice in any case, no matter what we do in relation to our patients. Decisions that we make are expected to be in their best interest. And putting my AMA-hat on, our interaction with e-health should be no different and shouldn’t require any different concept than when we are interacting with patients in other ways.”

“E-health is a different way of interacting and recording data and I guess that’s why we’re well-educated and insured and act in the patient’s best interest. If you look at good medical practice and say well that’s the guidance that we’re all subscribe to, than this should apply to any interaction including e-health.”

But 130 years seems like a long time.

“We’re expected to keep paper records for a period of time and every time I try to get information about this, you know, nobody will give you a clear answer when you can dispose of them. Theoretically it might be seven years since you last used them but if you talk to a medical defence organisation they say: ‘well if you keep them longer that would be good.'”

“I’ve got electronic health records in my practice dating back to 1995 and you wouldn’t think of destroying any of those. I think it’s one of those areas that you think: is this information permanent? I mean, in 130 years is it going to be in a form that’s usable? I guess it’s one of these things we don’t know the answer to.”

How do we get doctors to use the PCEHR?

“Doctors have been sitting back asking: ‘well why should I engage with e-health when it’s not certain if the government is actually going to support it?” There has been a lot of uncertainty. We now have a strong signal from the government that e-health has a future and that we have a national infrastructure that we’re going to use.”

“Then we need to say to doctors: ‘well what is the benefit here?’ The primary beneficiary is the patient. The information collected that they can manage will provide the next doctor they see with accurate and up-to-date information. Specialists and public hospitals can get quick access to the curated information.”

“The reality is it’s going to make our lives easier and make our search time shorter and provide us with rapid access to accurate information. Opt-out ofcourse means that when you look for a PCEHR there’s one there; if the patient has been in hospital there will be a discharge summary; if you want to upload something it’s not complicated and you don’t have to sign people up. It will be more efficient.”

The budget mentioned revised incentives, can you tell us more?

“Nothing specifically, but I have no doubt that the practice incentive payments program will look at incentivising doctors to use electronic health records. Their software has to be SNOMED compliant, they need to have secure messaging protocols and be able to send messages between doctors and patients and utilise the e-health infrastructure. I think that’s going to happen.”

A problem with practice incentive payments is that they go to practices, not to doctors who are interacting with the PCEHR.

“It depends on how practices have set themselves up but you’re quite right. The Royle review recommended that there should be a link between annual health assessments, care plans and utilisation of e-health. This would be a direct reward for doctors if they interact with the e-health infrastructure. The government has indicated that it is going to try and implement the major recommendations of the Royle review.”

GPs could interpret a link between care plans and e-health as the government forcing them to use the PCEHR, because if they wouldn’t their income drops.

“It is by no means a definite outcome. It is something the PCEHR review commission thought would be worthwhile. The Primary Health Care Advisory Group [of which Dr Hambleton is chair as well] will consult with senior members of the profession to see what they think. I think it is pretty clear that people with high needs and chronic diseases would benefit from better electronic communication.”

I agree that certain people with chronic diseases could benefit from e-health. Many GPs however are weighing up their own risks of participating against the benefits to their patients, and that’s where some of the concerns come from.

“Yes, I think we should all look at issues like that. I suppose we will be looking to our indemnity providers to give us some guidance. The AMA has put out a guide for the use of the PCEHR which gives pretty good guidance. But if e-health reduces the risks for our patients and improves the care to our patients everybody is going to support it; if it does the opposite then they won’t.”

“I just want to make one more point. We focus on the PCEHR, and I understand why, but so many people have called me out and said: ‘we’ve spent a billion dollars on the PCEHR!’ but actually we haven’t. The national infrastructure that underpins the PCEHR is really critical for a successful e-health strategy.”

“Think about the individual health identifier, the individual practitioner identifier, practice identifier, SNOMED CT, Australian medicines terminology, secure messaging protocols and also a national product catalogue plus a national health services directory.”

“All of this basic infrastructure is built and can be used by other providers, different to the PCEHR, and that’s the exciting future. I think other products will emerge, which of course doesn’t mean that we shouldn’t make the PCEHR easier to use. We should. We’ve got to make it easier.”

Tricky medicolegal cases

I asked Dr Hambleton to comment on a few real-life cases. In some instances the doctors involved contacted their indemnity insurers but unfortunately insurers were not always able to provide advice. In his comments Dr Hambleton refers to the ‘AMA guide to using the PCEHR’ which can be downloaded here.

A patient saw another doctor in the same practice who did not upload the latest information to the PCEHR, and the patient subsequently complained to their own GP.

“There is no compulsion to upload anything to the PCEHR. A patient can ask the doctor to upload something but the doctor is not required to do it. The doctor may say: ‘I’m not your nominated healthcare provider but you need to see your own doctor to get another shared health care summary uploaded’. These sort of things need to be talked about in practice protocols and discussed with the patient.”

There was a practice that accessed the PCEHR when the patient was not present, and the patient threatened to sue the practice.

“Patients do provide standing consent for access to their records by registered healthcare providers, so they can assist with their healthcare.”

“I think we have to talk to the AMA or the indemnity providers, but accessing the PCEHR for reasons other than the patient’s healthcare probably is not appropriate access.”

One patient demanded that the GP did not mention essential information available in the PCEHR for a report to an insurance company. The GP was unsure what to do.

“That’s very clear. If you have to write a medicolegal report it would not be appropriate to access the PCEHR, as it’s the patient’s record. If you’re writing a medicolegal report doctors can only access their own records, unless the patient has given permission to access their PCEHR. Practices need to think about protocols that describe who accesses the PCEHR and why, and have systems in place to make sure this happens.”

Misleading, missing or incorrect information causes mistakes or harm. Many doctors are unsure how they can assess if information available in the PCEHR is reliable or not.

“I think this is a really important comment as well. You can’t assume that any information in the PCEHR is absolutely accurate. If you are using that information you often have the patient in front of you so when you are taking a history, check if the information is accurate or not. No information is ever going to be complete and we shouldn’t expect that the PCEHR contains complete information.”

“Patients have the right to say, for example, ‘please don’t upload the fact that I had a termination’. Patients should understand that we don’t have to use the PCEHR and if we do, it should be weighed up like any other object of information we get.”

By looking at the PCEHR billing information providers can find out where patients have been, eg other doctors, even if a patient has asked the other doctor not to upload anything to the PCEHR. Are we supposed to have access to this information?

“Well, supposed to and allowed to are two different things. When patients consent to the PCEHR use, they are basically providing standing consent for access to the information that’s there. They have given consent but they also need to understand what consent means.”

“Patients have a lot of control: You can shut it down to one doctor or you can shut it down to only the doctors you give the access code to, and patients can switch the controls on and off.”

Some doctors are concerned that information they upload may be deemed not 100% accurate, in which case they would be in breach of the PCEHR Participation Contract.

“We are trying to provide the best available data. We will be judged by the standard of what a colleague reasonably would have done in the same circumstances. The intention of a shared health summary is to provide the next practitioner with a guide to manage the patient. If you think about it: there is not much difference between uploading a health summary to the PCEHR and writing a referral to a colleague using that exact information.”

“It is part of good medical practice to continually review the information that’s there, and for example delete previously prescribed antibiotics from the current medication list, and look over the past medical history we’re providing to other doctors to see if it is still relevant and useful to the patient’s medical care. It is certainly true that if you upload reams of information you may confuse the next provider.”

Consumer’s opinion of the PCEHR

It is not easy to find balanced information about the PCEHR. For that reason I welcome the information prepared by the Australian Privacy Foundation. The APF has been an advocate for privacy protections, representing the public interest to governments, corporations and industry associations.

The APF has always strongly supported eHealth, but in a press release Dr Juanito Fernando said: “Neither clinicians nor the rest of the community understand the system, let alone the full implementation details.”

The APF has prepared two FAQs: one for health consumers (great for waiting areas) and one for clinicians. The government’s FAQs about the PCEHR can be found here.

Let’s hope the new information will improve awareness about the PCEHR and stimulate discussion about the many grey areas.

Participation – the secret sauce of health care

The previous Christmas parties at work were always nice. We sat down and were served a nice dinner. There was nice live music. We were fed and entertained – what more can you ask for?

Last year our management team took a different approach. We were not fed. We had to prepare our own food: Select the toppings for our pizza and bake it in the wood fired pizza oven. We waited patiently in line. We were the chefs.

There was no band. We had to sing ourselves – on stage. We were the entertainment. There were sumo suits; there was a gladiator ring. It was the best Christmas party ever.

Participation is fun. It creates a sense of ownership, responsibility and improves team spirit. That’s why social media works. Social media empowers. We have become participants instead of spectators.

This is how it should be in health care. I love it how some of my patients take ownership of their health. They are actively engaged, do research, ask questions and understand their treatment. As a doctor I’m not telling them what to do, I’m just part of their team.

Participation is the secret sauce. As health care professionals we must do everything we can to encourage participation.