The end of the My Health Record opt-out period is in sight. Unless the government decides otherwise, next month the vast majority of Australians will have a digital national shared health record. What’s next?
A while ago I saw a patient who was passing through my town, on her way home from Cairns to Sydney. She had been seen at the emergency department in Cairns and was told to visit a GP for follow-up. She had no hospital letter or medical records but with a few clicks I was able to get access to the hospital discharge summary through the My Health Record, which included results of blood tests, ECG and chest x-ray, and I could see what medications were prescribed.
This is a rare example of the benefits of the MyHR; once the system will be used at a larger scale this could become an everyday reality.
The Australian Digital Health Agency (ADHA) says that about 1.14M Australians have opted out and apparently the opt-out rate is slowing down. At the same time others are signing up and there is an expectation, based on the opt-out trials, that many of those who opted out will eventually opt back in.
The Australian My Health Record is a compromise between a consumer record and a clinical record. This means that there will always be people in both camps who are not completely satisfied. Despite everything we’ve come a long way.
Work in progress
The My Health Record, currently in version 9.4.2, continues to evolve. Looking back over the years progress has been slow but significant.
For example, the software is far less clunky these days; accessing a record or preparing and uploading a shared health summary can now be done within seconds; we got rid of the dreadful participation contracts; there is a secondary use of data framework and users can choose to opt-out of secondary use of their data.
It is expected that more pathology and imaging providers will come on board next year and the legal framework will be further adjusted to improve privacy of Australians, including complete deletion of data if people decide they don’t want a record anymore.
According to ADHA over 87% of Australians know about the record and more than 85% of general practice is registered.
It is likely though that this awareness is rudimentary despite hundreds of engagement activities by the agency and Primary Health Networks (PHNs). Most Australians will not be aware that they have control over who-can-access-what in their records and how to change the privacy settings.
The RACGP has held many PHN-based peer-to-peer workshops across the country as well as webinars for general practitioners and staff, and around 2000 people attended – which is a lot but probably not enough. Most non-GP specialists are not yet on board.
Then there are still the concerns about for example privacy, workflow and accuracy, many of which are summarised in this year’s senate inquiry report. It appears there is still work to do.
The next stage
The agency has started preparing for the ‘post opt-out period’. As it stands around mid December empty shell records will be created, and activated once accessed by providers or consumers.
ADHA says the aims of the next stage of the consumer campaign will be maintaining awareness, taking control of the My Health Record and encouraging consumers to discuss the MyHR with providers.
The provider campaign will focus on the expected benefits including improved efficiency, such as less search-time, and better health outcomes – although skeptics will question the latter claim by the agency.
There will also be a focus on getting specialists on board, aged care access, improved family safety and child protection and education for vulnerable consumer groups.
Meanwhile ADHA has released an international review of digital health record systems. The findings show that the Australian MyHR empowers consumers to access and personally control their information, including what’s in it and who can see it.
ADHA emphasised that, although many countries have laws that allow users to view their health information, only Australia and a limited number of other countries allow citizens to control who sees their information and request corrections to their own health data.
The MyHR PR machine is in full swing. It will be interesting to see what the response to the senate inquiry will be and what happens next year. I hope the momentum of recent times will continue.
What needs to change?
From a usability point of view the wow-factor is still missing and although that’s nothing new in healthcare, some work in this area would go down well.
For example, it would improve workflow and safety if doctors could download MyHR information not just as PDF but import new medications straight into a local medication list.
The secondary use of data framework is fairly broad, and could be tightened up a bit further. Many have commented that the messaging around the MyHR should be less promotional and more about benefits versus limitations – but I’m not holding my breath here.
What change do you want to see?
Details have been changed in the case above to ensure patient confidentiality.
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.
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.
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.
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.
I was asked to address the Committee for Economic Development of Australia (CEDA) about how to place health consumers at the centre of future healthcare reform and the delivery of health services. ‘Less is more’ is the presentation I gave on 2 November in Brisbane.
I would like to take you with me this morning to my practice in the Sunshine Coast hinterlands and introduce two of my patients. For privacy reasons their names and details have been altered.
To refer or not to refer?
My first patient is Susan, age 24. Susan requests a referral letter to a plastic surgeon. When asked she explains that she thinks her breasts are too small, and that she wants a breast enlargement.
What would you do if you were in my shoes? Can I please see a show of hands: who would refer Susan? Who wouldn’t?
This is of course about shared decision-making. I noticed Susan was slightly uneasy, she clearly felt uncomfortable about something, so I decided to explore her request a bit further. During our conversation Susan broke down in tears and told me that it was actually her boyfriend who thought her breasts weren’t the right size.
Our conversation about relationships and body image went on for over 20 minutes. Susan decided she needed some time to think things over and talk to good friends, and that she would come back if she needed further assistance.
Susan could also have gone online to an automated referral website.
This is a screenshot from a real Australian online referral service. Here, Susan would have had to fill out a brief online questionnaire, pay with her credit card and she would have received a referral instantly via email.
But Susan decided to make an appointment with me instead and left without a referral. She could have ended up with implants she didn’t really want or need – and a large bill.
Never just about a script
My next patient this morning is John. He comes for a repeat prescription for blood pressure pills. When he sits down the first thing he says is: “Doc, I can do my banking online, why can’t I just send an email to request my scripts?”
John has a blood pressure machine but hasn’t been able to use it recently as he has been overseas.
I take his blood pressure which is very high. I notice John has gained weight since his last visit. He tells me he has a new job and works overseas as a plant operator for a mining project– and hasn’t had much physical exercise. He suddenly also remembers that he needs boosters for his travel vaccinations. As I check the records I notice his blood tests are overdue.
Although John came in for a script it looks like there are several health issues he may want some help with. Email contact would have been more convenient for John – but some problems would have gone unnoticed if he hadn’t come in.
In my job it’s never just about a script or a referral. Opportunistic screening and preventive care are key elements that make general practice effective.
At the same time we must ofcourse find ways to increase the uptake of digital health solutions. Telehealth, video consultations and asynchronous consultations with the usual GP practice have many advantages including potentially reducing travel and waiting times for our patients.
Unfortunately, one of the main reasons for the low uptake is that Medicare currently subsidises face-to-face GP care only.
High value care
Good doctors know when not to ask for a test, when not to prescribe antibiotics or opiates, when not to refer and when not to operate.
There are some great initiatives appearing that promote ‘less is more’ healthcare such as ‘Choosing Wisely Australia’. This initiative brings consumers and health providers together to improve the quality of healthcare through reducing tests, treatments and procedures that provide no benefit or, in some cases, lead to harm.
On the other hand we are seeing more disruptive, commercial, mainly profit-driven healthcare: Competitive markets built around growth, turnover and profits, and as we all know corporate medicine can drive resources away from patient care to meet market priorities.
This chart shows what happened after the rapid expansion of after hours home visiting services operating outside the more traditional medical deputising approach.
The two bottom lines show the explosion of visits by after hours home visiting doctors, funded by Medicare, with no meaningful reduction of emergency department visits – the top line.
Although the service is convenient for patients, the question has rightly been asked: does it represent high value care?
Health Care Homes
A solution suggested a few years ago by the Royal Australian College of General Practitioners (RACGP) was the patient-centred medical home, which concentrates care and funding for a patient in one preferred general practice.
The model was meant to enhance patient-centered, holistic care. It included for example:
Support for coordination of care, to improve the patient-journey through the various parts of the healthcare system;
Support for practices providing a comprehensive range of services locally;
A complexity loading which would support practices to respond to socioeconomic and Aboriginal and Torres Strait Islander status, rural status and the age profile of their local community, and reduce health inequalities.
This concept was reviewed, adjusted, modified, tweaked and tuned but what the Department of Health eventually came up with was a very different model; a model that simply pays practices a capitated lump sum for patients with chronic health conditions, and removes the fee-for-service system for chronic care – without significant extra investment to keep Australians well and in the community.
The department’s version of the ‘healthcare home model,’ which doesn’t necessarily solve our main problems such as poorly integrated care, is being trialled but the profession is lukewarm at most.
What about performance indicators, targets and pay-for-performance? This seems to be a hot topic in Australia. It is tempting to pay doctors when their patient loses weight, has a lower blood pressure or improves sugar levels.
Pay-for-performance schemes have been tried elsewhere in the world but the results are disappointing.
For example, performance management has gone wrong in the British Quality and Outcome Framework pay-for-performance system and has resulted in:
only modest improvements in quality, often not long-lasting
decreased quality of care for conditions not prioritised by the pay-for-performance system
no reduction of premature mortality
loss of the patient-centeredness of care
reduced trust in the doctor-patient relationship
reduced access to GPs
decreased doctor morale, and
billions of pounds implementation costs
As Goodhart’s law says: “When a measure becomes a target, it ceases to be a good measure.”
Primary care is a complex system. Quality improvement processes that are traditionally applied to linear mechanical systems like isolated single-disease care, are not very useful for complex systems.
We know that countries with a strong primary care system have better health outcomes and more efficient health systems. An important ingredient is continuity of care by the same general practice team.
It involves empowering patients to drive their own care as well as improvements in the healthcare system. We need to listen to our patients. This may also mean that we need to slow down. Less is more.
The RACGP believes that when GPs can spend more time with their patients, this enhances continuity and quality of care and will result in less prescribing, less pathology tests, less referrals and, importantly, less hospital presentations.
This chart, based on data from the Australian Institute of Health and Welfare, shows that General Practice services represent less than 9% of total government recurrent expenditure on health. Less than 9%…
In comparison, expenditure for hospitals represent 46%. Are we really doing everything we can to keep people well, in the community and out of hospital?
4 take-home messages
I have four take-home messages for you today:
#1: Take the good, leave the bad
We need to test new models of care in the Australian context, but we must avoid making the mistakes others have made before us, such as the UK performance payment schemes.
#2: Slow down
Let’s slow down. Allow patients & doctors to spend time together when needed. High turnover or profit-driven healthcare is not healthy for patients, doctors and our health budget.
#3: Convenience ≠ high value
We have to find a balance between convenience and value. Convenience is important, but it is never just about getting a referral letter or a script.
#4: Keep people well in the community
If we want to make a difference we must strengthen healthcare in the community, when people are relatively well, not just in hospitals when they’re terribly unwell. Rechanneling funding from hospital to primary care would achieve this.
Data is like garbage, you’d better know what you are going to do with it before you collect it ~ Unknown
It took a while, but the Department of Health is now inviting submissions about the various ways digital health information in the national My Health Record (MyHR) should, and could, be used.
By law information in the MyHR can be collected, used and disclosed ‘for any purpose.’ This ‘secondary use’ of health data includes purposes other than the primary use of delivering healthcare to patients.
The consultation paper is not an easy-read and I wonder how many people will be able to make heads or tails of the document – but then again it is a complex subject.
Nevertheless, secondary use of health data seems to make sense in certain cases. As the paper states:
“Secondary use of health data has the potential to enhance future healthcare experiences for patients by enabling the expansion of knowledge about disease and appropriate treatments, strengthening the understanding about effectiveness and efficiency of service delivery, supporting public health and security goals, and assisting providers in meeting consumer needs
Risks and red flags
There are risks. For example, I would be concerned if insurance companies or the pharmaceutical industry would get access to the data or if the information would not be de-identified.
The consultation paper also mentions performance management of providers, and driving ‘more competitive markets’. These are red flags for many health providers because there is little evidence these purposes will benefit patient care.
For example, performance management has gone wrong in the British Quality and Outcome Framework pay-for-performance system and has resulted in:
only modest improvements in quality, often not long-lasting
decreased quality of care for conditions not part of the pay-for-performance system
no reduction of premature mortality
loss of the person-centeredness of care
reduced trust in the doctor-patient relationship
loss of continuity of care and less effective primary care
decreased doctors morale
billions of pounds implementation costs
According to the consultation paper it is ‘not the intention’ to use MyHR data to determine remuneration or the appropriateness of rebate claiming by healthcare providers.
Interestingly, a similar discussion is currently happening around the changes to the quality improvement incentive payments (PIP) to general practices and the proposed requirement to hand over patient data to Primary Health Networks without, at this stage, a clear data framework.
Research & public health
It seems reasonable to use the information in the MyHR for research or public health purposes with the aim to improve health outcomes. The access, release, usage and storage of the data should obviously be safeguarded by proper governance principles.
A good idea mentioned in the paper is a public register showing which organisations or researchers have requested data, for what purposes, what they have found by using the data and any subsequent publications.
I hope the MyHR health data will never be used for e.g.:
The My Health Record is far from perfect but still has much to offer. Unfortunately it has an image problem and its value proposition will need to be clearly communicated to health professionals. There are also several loose ends that need fixing, such as workflow challenges and the medicolegal issues around uploading and accessing of pathology and diagnostic imaging reports.
Knowing exactly what MyHR data will be used for and by whom will be an important factor for many in deciding whether to participate and at what level. ‘Where did our health data go?’ is a question health professionals and consumers should never have to ask.
You can complete the public survey here. Submissions must be received no later than midnight Friday 17th November, 2017.
It’s a sobering fact: apparently more people die from drug overdose than road traffic crashes.
Perhaps even more concerning is that most of these overdose deaths in Australia are not caused by illicit drugs, but by the fatal mixture of two or more pharmaceuticals – often medications I and my colleagues prescribe to help people improve the quality of their lives.
Take-home message one: The combination of opioids (like oxycontin) and medications such as benzodiazepines (e.g. valium) can be fatal – even more so if mixed with alcohol.
Dealing with drug dependence
Abuse of prescription drugs is a big problem and doctors and pharmacists are often unaware that some of their patients collect prescriptions from several prescribers and pharmacies. This can go unnoticed because our computer systems are not yet linked and the reporting systems have flaws.
For several years the RACGP, AMA and other health bodies have called for the introduction of Australia-wide Electronic Reporting and Recording of Controlled Drugs (ERRCD). Coroners have also been advocating fiercely for an ERRCD system.
Prescribers and dispensers should be able to access and share prescription information but this has only been happening in real-time in Tasmania.
Since 2009 doctors and pharmacists in Tasmania can access prescription information if there is a legitimate clinical need, via a secured, encrypted website. The information includes what opioid medications have been dispensed and when, and if there are concerns about drug dependence or ‘drug seeking’ behaviour.
The Tasmanian real-time prescription monitoring system has stopped doctor-shopping for restricted drugs. Similar data comes from overseas: New York has seen in a 75% drop in patients seeing multiple prescribers after the introduction of ERRCD.
Some sources claim the Tasmanian system has reduced opioid-related deaths, although it has been argued we need a better way of analysing prescription drug deaths.
ERRCD is an essential tool to help prescribers and dispensers, but is only one part of the solution to reduce opioid prescription misuse. We also need to review how we look after at-risk patients, including those living with mental health problems or substance use disorder.
Road to recovery
Chances are that I may actually not improve the quality of my patients’ lives by prescribing opioids or benzodiazepines long-term. There are drawbacks: side effects, risk of dependence, serious bodily harm and death. Occasionally the drugs can make the pain worse, a phenomenon called opioid-induced hyperalgesia.
Take-home message two: There is limited evidence of the long-term efficacy of opioids for the management of chronic non-cancer pain.
Some have argued that opiates such as Endone (oxycodone) have become the new paracetamol and that we also need to reappraise the treatment of pain in the acute setting.
GP teams, allied health practitioners and pharmacists will play a crucial role to help tackle the issues around drugs of addiction – while supporting their patients at the same time. Sometimes input will be required from addiction, mental health or pain disciplines.
Many resources, tools and education opportunities are available to assist doctors. Meanwhile, state governments need to get on with the much-needed introduction of real-time prescription monitoring programs that will ultimately connect into a national network.
There are many benefits of online health services and they can complement traditional face-to-face GP visits. But there are also examples that raise questions.
The young woman was in tears. When she came in she had initially asked for a referral to a surgeon for a breast augmentation. During the conversation it turned out that her partner had made it clear her breasts were too small.
We ended up having a chat about relationships and body image. At the end of the consultation she decided she needed some time to think things over and talk to good friends, and that she would come back if she needed further assistance.
The problem with online referrals
At first sight, the Qoctor website seems an easy, convenient online medical service that provides sick certificates and referrals.
The site tells visitors: “(…) we understand that a well person who simply needs a letter to see a specialist should be able to get one without requiring a GP consultation.”
I’d like to challenge that. The woman in the example above was well but did she need a referral to undergo an expensive procedure that would change her body?
There are many issues with a system that allows access to specialist care without a review by a primary care doctor. Unnecessary referrals, increased costs and further pressure on the hospital system are just the beginning.
Once a visitor has selected a specialist the system asks a few simple questions about allergies and previous surgery and there are some boxes to tick (see image). I wonder how many people will just enter through to get to the section where you pay and automatically receive the referral letter (as pdf file).
Good telehealth principles
Sometimes writing referrals is a straightforward process but often it is not. What is missing here are the safeguards with regards to other management options, coordination of care, the communication between the usual doctor and specialist, and follow-up. What about whole patient care?
Interestingly the service seems to assume that – after automatically cashing in the online referral fee – the patient’s usual GP will be responsible for the follow-up if required.
The Royal Australian College of General Practitioners (RACGP) has developed some common-sense principles for telehealth services, including on-demand online health services. These principles include the following:
On-demand telehealth services should preferably be provided by a patient’s usual GP or practice
On-demand telehealth services to unknown patients should only be provided when the patient’s usual practice cannot provide care for them, either in person (at the practice or by a home visit) or online, and no other general practices are physically accessible
Patient notes should always be sent to the patient’s usual GP or practice (with the patient’s permission). This ensures continuity of care and centralises patient records.
I suspect that most people are aware of the risks of online health services and will consult their GP first. At the same time there will always be people who are attracted to these services because they are quick and easy. It is also commercially enticing: if you sign up for Qoctor you may win a $100 Coles Meyer gift card.
The patient testimonials on the website, which probably go against AHPRA’s advertising guidelines for regulated health services, seem positive. The question is usually: are these real testimonials?
As always with disruptive technologies there is the convenience aspect for consumers – but is bypassing the most efficient and cost-effective part of healthcare by printing out an online ticket to the expensive part in the best interest of Australians? I doubt it.
Many of my patients ask for better quality of life, independence or patient-centred care. Patients also want their care teams to be on the same page. The government’s Health Care Home model seems to be about capitation and to some extent hospital avoidance, and may not address the needs of patients.
Although the model has some elements that may reduce potentially avoidable hospitalisations, it does so half heartedly. Participating GP practices will likely have to categorise their patients using a data extraction tool based on the UK’s QAdmissions algorithm and the Hospital Admission Risk Profile (HARP) questionnaire.
The patient risk selection tool, which has not yet been released by the government, will be going through GP patient databases like a big vacuum cleaner to determine disease complexity and predicted demand for unplanned acute care services. Higher risk categories will attract a slightly higher practice payment.
What’s missing is just about everything else – in particular a comprehensive multi-pronged approach shared by primary care providers and hospitals, incentivising multidisciplinary patient-centred team care.
Although the government talks about a new bundled payment approach, practices are paid a lump sum per patient regardless of how many services the patient receives – as far as I know this is the definition of a capitation system.
How will the proposed model further improve the way care is delivered to people with chronic and complex health conditions? Will it incentivise multidisciplinary care? Does it reach across silos and improve communication? Is the proposed change of payment system in combination with a hospital avoidance risk stratification tool enough to deliver the comprehensive, coordinated care many of our patients need?
The ‘biggest health reform in a generation’ did not receive extra funding from the government. I’m concerned that this is not yet the fundamental shift towards patient-focused healthcare as asked for by consumers and health professionals. What do you think?
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.
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.
When I got back from a family camping trip this month I noticed that, apparently, the government had made important eHealth announcements shortly before Christmas Day. In summary, the news was that the government is going ahead with its plans, despite objections from the RACGP, AMA and others. Hardly surprising, but still disappointing.
Practices will miss out on their IT support payments if they don’t get their doctors to upload patient health summaries to the PCEHR (now called MyHealth Record). These IT support payments were originally introduced to make sure practices have up-to-date computer systems.
The Department must have known that GPs are usually not employed by practices and that most are ‘contractors’. This effectively means that they run their own independent businesses within a practice. Stopping payments to the practice does not directly affect their hip pocket unless they own the practice. So this is bad news for business owners. The strategy could affect the quality, safety and security of the medical IT systems – which is not good for patient care.
The question is: will doctors be using the eHealth system more often as a result of this change?
The wrong tool
Dr Nathan Pinskier, chair of the RACGP expert committee for eHealth and Practice Systems was quoted in Australian Doctor magazine saying: “Practices can’t compel GPs to upload these health summaries. So the practice faces losing the whole payment. [The government] is using the wrong tool. If you want to fund GPs to do this work, then think about a separate MBS item number.”
Some of the responses from doctors to this article give a rough idea of what the general opinion seems to be:
“I will not participate in this ill-considered e-health scheme until the legislation catches up to make the e-health record ‘fit for purpose’ as a clinical tool for clinicians and not just as a data mine for Government auditors.”
“All this decision does is confirm that Ms Ley and Dept of health with their rhetoric of conciliation and discussion in consultation with primary care are nothing but a load of lies and an insult to primary care.”
“Then there will be all the vultures, like insurance and finance companies, who will start circling, seeing getting access (by a degree of sophisticated patient blackmail) to this information as a great cheap way of getting what they want without having to pay us for a report.”
“The daily GP practice number median (50% more, 50% less) is 40 patients a day (Medicare data). That is a practical average of 8 – 10 minutes a patient. If accessing, discussing, uploading adds an extra 5 minutes a patient, that will be a reduction in bulk billed cash flow of 33%. Overheads will remain the same. Can you afford it?”
Judith Sloan, economics journalist at The Australian Newspaper, wrote: “It’s a type of childlike optimism – the idea that governments can achieve lots of good things through the creation of large-scale, all-embracing information technology platforms.”
“(…) But rather than ditch what is an incredibly wasteful commitment of taxpayer money, the current government has decided to press on and switch from an opt-in arrangement to one in which patients are forced to have a PCEHR unless they object.”
Dr Pinskier in Australian Doctor magazine: “We have a view that there is a role in the 21st century for a consumer health record. But it’s unclear to doctors whether the MyHeath record is a consumer record, a clinical record or hybrid.”
“(…) It is still unclear what real purpose it serves. (…) It was a good idea a decade ago but now we have cloud-based technologies. We are moving away from Big Brother data systems. Is [the MyHealth system] still relevant?”
The AMA has also indicated that it’s unhappy about the changes to the eHealth incentive structure. In the meantime, opt-out trials are being prepared, which are another attempt to push health consumers and practitioners into using the heavily criticised system.
The other issues we can of course expect is that the targets will be increased but the incentive payments to practices will decrease over time. Not something to look forward to in the current climate of Medicare rebate freezes.
What happens with our data?
There are oncerns about the secondary use of the data in the record as well as excessive penalties for health providers. Monash University researcher Juanita Fernando recently wrote in a response on this blog: “As we have known for some time, the MyHR legislation explicitly allows the data to be used for reasons other than health care. GPs have seemed to be blissfully unaware that their own medical records may legitimately be accessed by any and all of their peers or colleagues.”
“Under the current MyHR ‘opt-out’ paradigm, everyone will actually have a record created, even if they opt out, only it will be ‘hidden’ on opt out. The security of this hidden record is not guaranteed. We seem not to have the option to have it not created.”
Secondary use of data, or the use of patient health information for purposes other than clinical care, is usually not the first thing people think of, but the recent revelation that over 60 organisations, including AHPRA, have applied to access our metadata for various reasons, is a reminder that this could be reality soon.
What the College says
RACGP President Dr Frank Jones said in a senate submission: “Penalties which may be applied for the misuse of MyHealth Record appear excessive and unnecessary and will greatly deter use by busy general practitioners. Provisions for penalties already exist within the Australian Privacy Principles so it is not clear why there is a need for additional penalties, civil or criminal, to be imposed.”
As everybody knows, the main thing that has been missing all along is genuine engagement with GPs. The RACGP submission to the Medicare Benefits Schedule (MBS) Review Taskforce hit the nail on the head and the government would do well to heed this advice:
“Meaningful engagement between the Federal Government and the healthcare sector is needed to address these issues and for myHealth Record to be successfully adopted.
The submission continued: “Meaningful use of MyHealth Record relates to safety, quality, communication and healthcare outcomes – not data collection. Characterising myHealth Record as a data source rather than a tool to support clinical practice is of concern to GPs, who will be the primary users of the system (…).”
All in all I’m becoming less and less optimistic about the future of the national e-health database, and it seems I’m not the only one. There are many alternatives but sadly the government is pushing ahead and, whether it does so on purpose or not, the project is rapidly getting closer to the edge of that big, overhanging cliff. The analogy with lemmings comes to mind.
I had an interesting experience recently. I participated in a webinar organised by the Department of Health. It was supposed to be a consultation of GPs about the uptake of eHealth.
It went something like this: “We want to gain feedback from GPs about how we can get you to use the eHealth. This is how we’re going to do it; we’ve already organised training and we’re kicking off after the Christmas break. But before we start this session you must know that we cannot consider other options or timeframes.”
I was speechless. Literally – as I was not allowed to speak. I could only send little text messages via the closed online question platform. I was unable to see the feedback from other online participants.
For years health providers have repeated the same message over and over: if you want to make eHealth successful please take us with you.
The government is talking about new incentive payments to practices, ‘refreshed’ training programs and opt-out instead of opt-in, but there is little mention about improvements that make health providers want to use the PCEHR (now called ‘My Health Record’).
I find it concerning is that the current plan only encourages uploading of documents. What should be facilitated is safe and more efficient care for our patients. At the moment it seems to be all about the number of uploads to the system. I cannot help but wonder what higher level performance indicators are at work here.
Any incentive has to be effective at provider level to create a behavioural change. In other words, we must encourage individual practitioners to use eHealth, not just organisations and practices.
It is no surprise that the government failed again to enlist support from the profession. In its submission to the Department of Health, the RACGP wrote:
“(…) the RACGP cannot support the proposed mandatory requirements for the uploading of a specified quota of clinical documents to My Health Record. Meaningful use is not just uploading information to My Health Record, and nor is uploading information an acceptable starting point for meaningful use. Meaningful use relates to safety, quality, communication and healthcare outcomes – not merely numbers.
E-health experts have warned that the system is still unsafe. For example, some software programs merge medication dose and instructions. Others have warned that the uploaded clinical information does not always arrive in the My Health Record database.
Then there are the unanswered medicolegal issues. For example, we still need clarification about some of the basics, including the purpose of the system. This is essential if we want to encourage meaningful use of eHealth.
As I wrote in MJA Insight, I would be happy if the data in My Health Record was used for other purposes such as disease surveillance or even feedback on my clinical management but, in the end, it is the patient’s record and they must have a say in it. A proper consent procedure is essential for any use of PCEHR data outside individual patient care.
It appears the system operator is currently authorised to collect information in individual health records for law enforcement, health provider indemnity insurance cover, research and public health purposes, and as required or authorised by law. This process should be more transparent with a better explanation of what it means for both patients and providers.
Removing the need for provider participation agreements seems like a good idea as these documents are very one-sided. But it is not clear to me what this will mean for the liability of organisations, practices and individual practitioners.
A failing strategy
I find it challenging to have a meaningful discussion about incentivising uptake of eHealth when there are so many unknowns. It’s like trying to sell a house that’s still being built and everyone knows there are construction issues. Pushing people to live in the house does not make it a safer or a better building.
The RACGP warns against hastily implementing incentives and advises the department to wait for the outcomes of the Primary Health Care Advisory Group review, the MBS review, and the opt-out trials which are due to start.
Once the identified problems with My Health Record have been addressed and resolved, the RACGP believes that uploading of patient information to My Health Record would be best supported by a practitioner incentive payment (SIP) or an MBS rebate.
It will be interesting to see the response from the department to the criticism. I’m afraid that history will repeat itself: they’ll go full steam ahead, only to discover in one or two years time that the strategy didn’t work. What do you think?
This is good news. Doctors and patients are often confused about the rules regarding the collection, use and disclosure of information on a PCEHR.
An example of ambiguities includes doctors being advised not to use PCEHR data when providing third-party reports. But what happens to PCEHR information that, over time, has been incorporated in local databases? And are doctors allowed to access a PCEHR in the patient’s absence?
What’s the purpose?
This lack of clarity reflects a bigger problem — the absence of a clearly articulated and shared goal underpinning the national e-health system.
In the absence of an agreed purpose, rules and systems can become arbitrary or misguided, restrictive and lacking in consistency. Doctors, patients and policymakers first need to agree on the main purpose of the PCEHR.
Ultimately it is a tool intended to improve the provision of care: patients disclose their personal data to doctors and, in return, receive more effective and personalised care. I would be happy if the data were used for other purposes such as disease surveillance or even feedback on my clinical management but, in the end, it is the patient’s record and they must have a say in it.
A proper consent procedure is essential for any use of PCEHR data outside individual patient care. It appears the PCEHR system operator is currently authorised to collect information in individual PCEHRs for law enforcement, health provider indemnity insurance cover, research and public health purposes, and as required or authorised by law.
This should be more transparent with a better explanation of what it means for both patients and clinicians.
Patients should also understand the pros and cons of setting advanced access controls, especially now an opt-out system is on the cards. Adequate support will be required for specific groups including the elderly, people with a disability or mental illness, and some 14–17-year-olds.
The right to be forgotten
At the moment, PCEHR data are required to be held for up to 130 years. An interesting concept to consider is the “right to be forgotten”, which has been introduced in the European Union Court of Justice to give people the right to remove data from search engines under specific circumstances.
This concept is applicable to e-health. Patients, for example those with a mental health diagnosis early in life, may want to have part or all of their PCEHR record erased at some point (not just deactivated) to avoid stigmatisation or other repercussions — rather like the expunging of juvenile criminal records to give young people a fresh start.
Liabilities & incentives
Removing the need for participation agreements seems like a good idea. The Department of Health proposes that the liability provisions in the agreements be disposed of, rather than transferred to the legislation.
It is unclear what this would mean for the liability of doctors and health care organisations.
It seems new incentives will be paid to doctors who upload records to the PCEHR on behalf of patients with care plans. Although this will be welcomed by most doctors, it excludes other patients who don’t have a care plan but who would also benefit from a PCEHR.
Linking payments for chronic disease management to the uploading of documents is complicated. If it is introduced without other improvements to the PCEHR system, it could create more resentment among doctors and may lead to poor-quality uploads
What happens if patients do opt out of the PCEHR? Will their doctors be paid less to look after them?
And what if a patient who would benefit from a PCEHR declines to have a care plan, or the doctor provides chronic care without creating care plan documents or health assessments? In that case, there would be no incentive for the doctor to upload data to the PCEHR.
An upload incentive across the board would avoid these issues.
More criminal penalties?
The government is also considering introducing more criminal penalties, including jail terms, additional to the monetary civil penalties that already exist for data breaches. If we want to increase participation and engagement by doctors, I’m not sure that more penalties will help.
The challenge is to make e-health an integral part of health care, and align its purposes and values with usual clinical practice.
Training & education
Astronomer Carl Sagan said: “We live in a society exquisitely dependent on science and technology, in which hardly anyone knows anything about science and technology.” If e-health is to succeed we need to invest in information and communication technology skills. We must train the next generation of e-health designers, builders, managers and users to ensure our e-health system is safe and effective.
This article has previously been published in MJA Insight. Many thanks to Ms Jen Morris, Dr Karen Price and Dr Michael Tam for their valuable feedback and suggestions on the draft of this article.
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 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?
Karen Dearne, freelance journalist and former e-health writer for The Australian, has produced a review of the PCEHR, on behalf of the Consumers e-Health Alliance.
The conclusion is disappointing: It appears that the government has been successful in uploading non-clinical documents about users, but otherwise our expensive national e-health record system seems to be in a pilot stage.
The full document can be downloaded here. Below are a few quotes from the report.
The numbers are telling
“After two years and more than $1 billion in costs, only 26,332 shared health summaries have been uploaded by doctors to the troubled Personally Controlled e-Health Record system.
While the Department of Health and the National e-Health Transition Authority trumpet their ‘success’ in signing up 1.7 million Australians to date, the truth is that the system holds a mere 288,368 clinically useful documents.
Obviously, if every person who had registered had just one clinically relevant document uploaded to date, there would already be 1.7 million documents available.
For all the millions of hospital admissions across the country over the past two years, only 42,397 discharge summaries have been uploaded. Just 2,403 event summaries have been created. Specialist letters? Seven. Electronic referrals? Six.
These are the key items of value consumers want – and expect – to be available through a national e-health system.
So where does that 288,368 come from in relation to clinical records? Prescription records (55,206) and dispensing records (162,030) from pharmacies account for almost all, at 217,236 in total.
“That means there are only 71,132 potentially medical useful records available for just a tiny fraction of those 1.7 million people who signed up in the hope of better healthcare through information-sharing.
Now, some consumers were keen enough to enter their own health summaries, notes, observations and advanced care directives so there are 61,674 consumer created documents. Healthcare providers cannot access this material.
But hang on, the annual report of the PCEHR System Operator says more than 140 million records – 140,639,585 to be precise – are now in the system.
Well, yes, but more than 140 million – 140,289,543 – of these are Federal Government documents – Medicare has supplied MBS and PBS items, childhood and organ donor registry documents, while Veterans Affairs’ has handed over medical and pharmaceutical benefit claims.
Oddly, with only 1.7 million people registered for a PCEHR, it appears that each of these has generated an astonishing 80+ government record documents each.
And that assumes everyone has requested that this data be provided by Medicare, as it’s optional. (Medicare holds records on around 23.3 million individual Australians.) See Table 2.”
A persistent lack of engagement?
(…) “The silly thing about the situation is that almost 100 per cent of GPs have been using their own electronic patient health record systems for years.
Their frustration lies still in the lack of a secure national information-sharing infrastructure and useful clinical decision-making support, no matter how many times NEHTA claims delivery.
“(GP) frustration lies in the lack of a secure national information-sharing infrastructure and useful clinical decision-making support.
Doctors are being asked to use a ‘national e-health system’ that is far inferior to what they have on their desktops, and what the average consumer uses at home.
The usage figures revealed in these various annual reports demonstrate that the national PCEHR system has not yet moved beyond the pilot stage.
Could this failure be due to the basic reluctance of NEHTA and the Health Department – over many years – to properly engage all of the participants in the process and effectively address their issues and concerns?
It is worth noting that the key recommendations in the agreed National e-Health Strategy related to strong governance and practical engagement with all stakeholders from day one.”
Time to revisit the National e-Health Strategy
(…) “The big questions that have to be considered now by the Federal and State Health Ministers are what exactly is the PCEHR intended to achieve, and is it worth spending further large sums on a vast overhaul, when there may be other options and better alternative approaches.
Perhaps it’s time to revisit the National e-Health Strategy.
Wait a minute. Wasn’t Deloitte employed to do just that, last year, under a ‘Refresh’ banner? Sadly, Deloitte’s revised strategy document has not been released.
The Health Minister might find that publishing this material for public consultation would be a great way to restart a national discussion.”
Where are we at with the PCEHR? I asked four leaders in the field about their thoughts: Has it been a success or a failure? Can it still be improved and if so, how?
Let’s get the basics right first: Frank Jones
Dr Frank Jones, President of the Royal Australian College of General Practitioners: “The concept was always good, but it failed to engage with front line medical professionals and was hijacked by lawyers. I am also really unhappy with the government’s plan to upload results if not viewed by the requesting doctor after seven days – a disastrous situation!”
“The other thing that is never talked about and that people outside GP-land are unaware of, is that GPs can already access their practice patients’ notes, anywhere, anytime. GPs leading the way again – in many ways this has diminished the value of a PCEHR at a front line GP level.”
“Lets get the basics right first: Initially we need the information such as active relevant medical issues, allergies and OTD medications.”
In its present form a failure: Brian Morton
Dr Brian Morton, Chair of the AMA Council of General Practice: “In its present form as a GP I would have to say it’s a failure. There is no recognition nor remuneration for GPs to spend the time to prepare and submit the data which must be done with the patient present. Professional clinical input to the design process has not been given the status needed to make PCEHR workable and relevant to medical practice.”
“Privacy and consumer political correctness have over-ridden safe principles of health care. The very poor uptake of the PCEHR is evidence of this. If we are to reap the benefits then recognition of the cost of data entry needs to be made.”
“Remove and prevent data which is not clinically relevant for care, for example Medicare billing data, as medical assumptions cannot be safely made based on a billing event. Identify clearly in the record that data has been removed or data hidden; the ability to over-ride the control of this is inadequate for safe care. Start the use of PCEHR with small and focused data entry such as active medical history.”
“Make a Medicare item number for the initial entry of data and an item for review yearly by the patient’s usual GP. Enable the functionality of automatic loading of diagnostic imaging & pathology data to the PCEHR when it is received and reviewed by the requesting provider. For example in our software: when it is transferred from inbox to patient record.”
A clear disaster: David More
E-health blogger Dr David More says: “It is a clear disaster as it has failed to be utilised by, and successfully engage with, either clinicians or patients to any significant degree after what is over two years since initial implementation.”
“It should simply be abandoned and a new eHealth Strategy based on serving the needs of clinicians in information sharing and use developed. Patient engagement should be at the level of providing useful e-Health services to such as e-mail, repeats, referrals, results and record access via local practitioners.”
Effectively dead: David Glance
Dr David Glance, Director Centre for Software Practice, University of Western Australia: “I would say that the PCEHR is effectively dead – there is some interesting commentary here. The liberal government has not killed it but they haven’t supported it actively either. Nor have they put forward any other strategy. So given the financial climate we are in now, I don’t expect that to change.”
“I fundamentally believe that Australia has a basic structural issue when it comes to implementing central strategies around eHealth. We are still lagging in electronic record adoption in our hospitals and public health services and to a lesser extent within the specialist community. Until that changes, any shared electronic health record will always have gaps and be less than useful.”
“Clearly NEHTA needs to be disbanded and something else put in its place. It was self-serving, bureaucratic and pretty hopeless when it came down to it.”
“With regard to opt-in/opt-out, I would say that opt-out is always a better option with a far easier access mechanism than was implemented for the PCEHR. But given how awful the implementation was, the point was moot. Talking of the implementation, given what we know about user interface, you would have thought that the interface to the PCEHR could have been a lot better than it was.”
The start of Doctor Amir Hannan’s career was a rocky one. In 2000 he took over the surgery from convicted murderer Doctor Harold Shipman. On their first day, Amir and his colleague found that Shipman’s children had removed all furniture, phones and computers from the practice. Equipment had to be borrowed from other surgeries.
The practice has long since been turned around into a thriving GP clinic with a strong focus on eHealth; for the past 7 years patients have had online access to their electronic health records.
Around the world there are several projects going that allow patients to get access to their records, and Amir Hannan is one of the trail blazers.
He did his medical training at Manchester University and then trained as a General Practitioner in the north-west of England. I got in contact with him after he posted a comment on my blog post about OpenNotes, and he was kind enough to talk to me about his amazing pioneer work.
Amir is passionate about the project: “I am motivated by the desire to do the very best for patients and staff by bringing out the best in all of them. Empowering them, empowers me. When they benefit, I get an immense sense of achievement. It becomes infectious and helps me to overcome any challenges I may face.”
The practice administration and clinical system he uses in his practice is called EMIS, widely used by GPs in the UK. Amir: “EMIS also provides a secure online facility for patients, called ‘Patient Access’, which allows patient access from a range of internet devices.”
What are the benefits?
Amir says the system offers many advantages:
“Benefits include a more open relationship with patients, which enables patients to feel more in control. They can book appointments online, order prescriptions online, update their contact details and access the full records if they wish. This helps patients to read what the doctor or nurse has said, see test results or letters as soon as they arrive back in the practice, check for any errors or missing data and help with completing medical and insurance forms.”
“It improves the relationship between patient and clinician, leading to a partnership of trust.
“Information buttons provide links to trusted information so that patients do not have to do a Google search. You can do all these things via smart phone, tablet or PC.”
“It improves the relationship between patient and clinician, leading to a partnership of trust. Patients use it intelligently saving their time and doctors’ time to make the system safer and more efficient.”
“Patients can send secure messages electronically, write into the surgery on paper and their comments can be added to the record or they can complete an Instant Medical History which we have recently introduced. We do not encourage email as it is not a secure means of communication and our replies could be seen by other family members which may compromise the patient’s right to confidentiality.”
“We need to do further studies to prove patients accessing their records and, most importantly, understanding them, do in fact enjoy better outcomes such as improved blood pressure control, diabetes care or reduced time off work. Anecdotally patients seem to have better compliance of treatment and we have many testimonials from patients describing their positive experiences. Such evidence may become available as more patients sign up.”
What are the risks?
Amir feels his patients are more in control of their health and care and, at least anecdotally, there seem to be some benefits. But are there any downsides?
“We take security and privacy very seriously. The software requires patients to register using their pin numbers for the service and then use passwords to get access to their records. This seems acceptable to the patients. We have not had any data breaches to date. We offer advice for patients to help them understand these issues better.”
“Very few patients ring the surgery because they do not understand something and we have not been sued for anything as a result of giving patients access to their records. In fact we are still waiting for our first complaint and that’s after offering the service for over 7 years. Currently over 2650 patients, 23% of our registered patient population, have access to their records. Records sharing is safe and does not increase litigation.”
“Every encounter afterwards can lead to patients learning more about their symptoms and how they can do more for themselves.
“It does take some time for patients to sign up for online services, and we do have an explicit consent process. Patients are asked to get their pin numbers from the receptionist, look at some of the support material which explains what records access is, and then complete an online questionnaire which confirms their understanding of the issues. Their request then has to be processed which takes about 10 minutes per patient.”
“It is a journey of discovery for patient and clinician so that every encounter afterwards can lead to patients learning more about their symptoms and how they can do more for themselves. Paradoxically, this seems to lead to a reduction in anxiety because patients, carers and family can check what has been said, see that the practice has done what it agreed to do, gain a better understanding of their health and improve their health literacy – patients worry less as a result.”
Amir’s practice offers the service for free to patients, although there is no funding in the UK to support practices to engage with their patients online. Amir: “Our implementation using the practice-based web portal has required the practice to provide its own resources. The current strategy locally has been for the market to drive innovation, which has failed completely. Funding will need to be made available to encourage innovation and enable stretched practices to invest in such tools to gain maximum benefit and to scale this.”
The UK Royal College of General Practitioners has published a guide titled ‘Enabling patients to access electronic medical records. A guide for health professionals‘. Amir recommends this to anyone who is interested in setting up a similar system.
“My hope is that one day all people in the world will be able to do this. This is the future of healthcare and it is happening now! See how others are doing it, such as in the UK: PatientView or in America: Kaiser Permanente and OpenNotes.”
“I use my twitter account to share experiences with others.
“It is not easy and it takes time, resources and effort. Build links with others and collaborate with them to share experience and knowledge. Build a practice-based web portal such as ours, which helps to engage with patients and provides a mechanism of informing, signposting, engaging and empowering patients and their carers. Engage on twitter and social media – there is a great deal of interest. I use my twitter account to share experiences with others.”
“Listen to your patients and staff. Work with them and develop a strategy and a plan. Most importantly get on and do it. Don’t procrastinate or worry about what might happen – instead think about the opportunities and consequences of enabling patients to access their records and understand them.”
Although doctors are in the top three of most trusted professions, they also have a conservative image.There is the perception that doctors are resistant to change, such as the introduction of eHealth in their practices.
Nothing could be further from the truth.
Doctors are used to change. Medicine and healthcare are areas where new developments happen on an almost daily basis.
However, just because something is new, doesn’t mean it’s better. Many doctors have learned this the hard way. That’s why we need to be convinced before we change our current practices. Not with arguments but with evidence.
It’s best to try a new idea out on a small scale. Prove that a product or service has benefits to patients and doctors – but no major disadvantages – and we will consider it.
Consumer access to electronic health records may not be far off. In the not-so-distant future people will look up their file from home or a mobile device. They will also be able to add comments to their doctor’s notes.
The Australian PCEHR allows limited access, but the US OpenNotes record system has gone a step further by inviting consumers to read all the doctor’s consultation notes.
Pulse+IT magazine reported that 18 percent of Australian doctors believes consumers should be able access their notes; 65 percent would prefer limited access and 16 percent is opposed to any access at all.
What are the pros and cons? Here is my take:
Improved participation and responsibility
Increased consumer’s knowledge of their health care plan
Consumers can read their notes before and after a consultation as reminder
Consumers can help health practitioners to improve the quality of the data, eg by adding comments
Consumers can better assist practitioners in making fully informed decisions
Consumers may interpret the data incorrectly creating unnecessary concerns
Increased risk of security breaches and unauthorised access
Unwanted secondary use of the data by eg insurance companies or governmental organisations
(Parts of) the records may end up in undesired places like social media
Practitioners may need to change the way they write their notes
Increased medico-legal risks and potential for errors occurs if data can be altered, removed or hidden by consumers
An article in the New England Journal of Medicine reported that OpenNotes participants felt they had a better recall and understanding of their care plans. They also felt more in control. The majority of consumers taking medications reported better adherence. Interestingly, about half of the participants wanted to add comments to their doctor’s notes too.
Most of the fears of clinicians were, although understandable, ungrounded:
The majority of participants was not concerned or worried after reading what their doctors had written (many just googled medical terms and abbreviations)
Consumers did not contact their doctors more often
A minority of doctors thought OpenNotes took more time, others thought it was time-saving
According to the OpenNotes team transparent communication results in less lawsuits. I couldn’t find any information about the security risks of the system.
Overall, consumers were content: 99% percent preferred OpenNotes to continue after the first year. Doctors were positive too, see this video:
Push and pull factors
Consumers have the right to know what information is held about them, and they have the right to get access to their health records. Online access therefore seems to be a logical step to exercise these rights. Although the PCEHR allows consumers to see a summary, the consultation notes cannot be viewed. OpenNotes is about sharing all consultation (progress) notes between a consumer and his/her practitioner.
I believe there are 3 trends happening that will push this development:
The culture of sharing data online
The increasing consumer participation in health care
Evolving digital and mobile technologies
The 3 main reasons why it will not happen overnight:
An attitude change towards full access takes time
Security and privacy concerns
Lack of incentives for software developers and practitioners
Improving transparency in healthcare
Online access to electronic records (viewing and commenting) will boost transparency. It will change the interaction between consumers and practitioners and may even improve quality of care. I’d love to see more trials and experiments in this area. What do you think?
One of my favourite episodes of the SF series Battlestar Galactica begins during peace time: the Cyclon war is long over and old battle ships are decommissioned – like the Galactica. The ship is transformed into a museum.
However, the decommissioning ceremony has barely finished as a new Cyclon attack begins. Modern spaceships are quickly destroyed by a fatal computer virus that uses the fleet’s network. Because the old, bulky Battlestar Galactica is a standalone ship and not equipped with networked computers, it escapes the attack and plays a vital role in the search for the mythical planet earth.
How secure are healthcare services?
In a Wired article titled It’s insanely easy to hack hospital equipment, Kim Zetter gives a frightening account of security issues in a US hospital with networked medial records, surgery robots, drug infusion pumps, bluetooth-enabled defibrillators, x-ray and imaging databases, and temperature settings of refrigerators storing blood and drugs.
Only the anaesthetic machines were safe as they were not interconnected and didn’t allow remote web administration. There’s the analogy with the Battlestar Galactica…
Some say digital security in healthcare is stuck in the Stone Age. In Australia, online government portals like my.gov.au give access to E-health records (PCEHR), Centrelink, Medicare, Child Support and the Department of Veteran Affairs. But IT security experts warn that these linked databases are at the mercy of of hackers because of flimsy security.
Connecting medical equipment
A few years ago, when we introduced free WIFI in our waiting rooms, we discovered potential security risks that had to be mitigated first. That was just a small WIFI network. Australia’s first digital hospital will soon open its doors.
It’s an amazing, innovative project. The hospital network contains 310 km of fibre-optic cable – everything is connected: E-health records (PCEHR), blood pressure machines, insulin pumps, X-ray equipment, renal dialysis and anaesthetic machines – even the whereabouts of doctors and patients is recorded via electronic badges.
Medical equipment is usually reliable and safe, but has not always been designed to encrypt and store information securely. If you start connecting it all up to a network in hospitals and practices, scary things can happen.
Insider misuse is common
Protecting a network from external threats outside the firewall is crucial. But networks should also be protected from inside threats, such as unhappy employees. Research shows that many employees who lose their jobs, leave with confidential company data. Insider misuse happens more often in healthcare than in other industries.
Lack of knowledge is another security threat, for example when healthcare workers write down or share passwords, accidentally open infected email attachments or download malicious data from the internet or other carriers, like memory sticks. Loss or sharing of data carriers including business phones and laptops are also common scenarios.
The next black swan?
On the black market healthcare records and insurance credentials are worth 20 times more than credit card details. Healthcare data is combined with other information into complete packages, sold for $1000 or more – reason why the FBI has warned health care providers security is too lax.
ASIC Australia Chairman Greg Medcraft said cybercrime across the world is rising, adding up to an annual cost of $110 billion. “Cybercrime is a systemic risk and is potentially the next black swan event,” he said.
Advancing technology is exciting but creates challenges at the same time. Secure equipment is a basic requirement. It’s good practice to have a data security policy in place. Staff should be educated and reminded regularly of the do’s and don’ts.
Sensitive patient and business records should be monitored closely. Data leak protection systems are able to restrict and monitor what data is copied and by whom. Accounts should be shut down when people leave the organisation.