By the end of the year Australians will have an online digital health record, unless they opt out of the system. The details of the move towards opt-out will be released soon.
The Australian Digital Health Agency (ADHA) is ramping up its activities to prepare for the change to opt-out. The large-scale operation will involve extensive stakeholder engagement, a nation-wide communication and advertising campaign and increased support for consumers and clinicians.
For consumers who have not opted out at the end of the defined three-month period later this year, a My Health Record (myHR) will be created. The record will be activated when used for the first time by consumers or clinicians.
Staff levels of the call centre – transferred from the Department of Health to ADHA – will increase from thirty to two hundred and will operate around the clock during the opt-out period.
The record will initially be empty apart from two years worth of retrospective MBS and PBS data. Consumers have the option to remove this data.
Pathology and imaging reports are uploaded into the MyHR one week after the test date. Some sensitive tests, such as HIV, may not be automatically uploaded depending on the various State or Territory legislation.
Clinicians and consumers will have the opportunity to stop the upload of results and other reports if desired. Consumers can restrict access to or remove reports from their MyHR.
No stone left unturned
No stone has been left unturned in finding ways to make Australians aware of their right to opt out: a wide scale advertising campaign will use various media including radio, social media, billboards and cinemas.
Materials such as waiting room brochures, tear-off pamphlets and reception cards will be made available to providers. Medicare will be sending out brochures to Australians. Consumer organisations have been engaged to help with awareness.
It is expected that the adoption and active use of the MyHR will vary across Australia as a result of the availability of already existing digital health solutions in various states and regions.
For example, in areas where discharge summaries are not always easily made available by hospitals, the uptake of the MyHR may be higher.
Currently there are about twenty million Australians without a MyHR. Based on the trials it is expected that only a small percentage, about 2%, will opt-out.
It looks like the opt-out procedure will be relatively simple and can be done via an online self-service portal or by phone through the help desk. Hard copy opt-out and ‘election-to-not-be-registered’ forms will also be available through post-offices, and will be made available to hard-to-reach populations.
Although care has been taken to make sure there is no coercion not to opt-out, those who do will receive a notification that their medical information may not be accessible during emergencies. They will also be asked to give a reason after they have opted out.
The MyHR website will shortly contain information about the opt-out procedure. It is also expected that the FAQ section will be expanded to assist consumers in making a well-informed decision.
Risks and challenges
The MyHR offers clear benefits as clinicians will have increased access to information such as shared health summaries, discharge summaries, prescription and dispense records, pathology reports and diagnostic imaging reports.
However, every digital solution has its pros and cons. It has been decided that the risks associated with the MyHR will not be explicitly discussed on the website.
Behind the scenes however, risk mitigation has been one of the priorities of ADHA. This obviously includes the risk of cyber attacks and public confidence in the security of the data.
Another challenge for ADHA will be to manage expectations – before, during and after the opt-out period. The reality is that the MyHR is not a be-all and end-all, and is still on a development journey.
As a result of the troubled past of the digital record there is a large group of skeptics. It appears that so far ADHD nor the Department of Health have been able to get this group on board. The usual promotional material, touting benefits, is unlikely to change anything. A more effective approach would involve addressing the concerns, issues and perceived obstacles.
Primary Health Networks (PHNs) will assist in spreading the message. The PHNs involved in the opt-out trials reported high levels of success in engaging providers.
Other parties including the Royal Australian College of General Practitioners (RACGP) will provide peer-to-peer education, which may help to balance the message, address some of the concerns and manage expectations.
Edwin Kruys is a member of the My Health Record expansion program steering group.
The information in this blog post is intended for informational purposes only. It may not be complete and is subject to change. Please refer to offical ADHA sources for MyHR updates.
It looks like we’ve entered a new chapter in the Australian digital health story. After several rocky episodes it seems the force is with us and Australia’s digital health record system is on the road to recovery. At the same time there are challenges ahead.
When it comes to the national electronic My Health Record (formerly PCEHR) there is no shortage of scepticism among health professionals. Many have disengaged after unsuccessful encounters with earlier clunky versions of the system.
A lot of work has been done to make the interface easier to use. Accessing the system and uploading a shared health health summary has now become a fairly simple process – as it should be.
Towards opt-out in 2018
The My Health Record will get a massive boost in the middle of 2018 when the system changes to opt-out. Currently Australians have to actively sign up if they want a digital shared health record but next year every Australian will have a record – unless they opt out.
The strategy outlines plans between now and 2022 for secure messaging between providers and with patients, telehealth, interconnectivity and interoperability, electronic prescribing and dispensing, test beds for new digital health technologies, development of health apps & tools and workforce training and upskilling.
The Australian Digital Health Agency (ADHA) has indicated it wants to co-design an implementation framework with the broader healthcare sector.
ADHA CEO Tim Kelsey said on Norman Swan’s RN that it is not just another strategy document: “I want to reassure people that this is going to be about delivery and people should hold me and the agency to account for delivering actual real benefit.”
Kelsey also admitted that at the moment the My Health Record doesn’t have as much clinical value as most doctors would want, but that a record of dispensed PBS medications is currently available. More clinical content will be coming soon, such as radiology and pathology.
The strategy document acknowledges some of the issues doctors have with regards to security, safety and use of the data: “They [doctors] need assurance that the digital systems they use support them to meet their obligations to keep their patients’ health information secure and private, and that health data will be used safely and appropriately to improve patient outcomes.”
Doctors have also voiced concerns about the medicolegal risks that come with accessing a patient’s My Health Record, for example when diagnostic tests and images will be available that may not have been reviewed and actioned by the requesting clinician. Clear guidance is required on how the reports are to be handled and who is responsible.
Most clinicians will not have an issue with de-identified data in the My Health Record being used for research or public health purposes, but transparency around secondary use of data will be welcomed and would encourage engagement with the system.
Uploading of shared health summaries is happening in general practice but concerns have been raised about the quality of some of the data. The current incentive payments seem to encourage volume. However, if the uploaded clinical content is not useful, others may not engage or upload data from their end. A classic case of the chicken and the egg.
It seems the Australian Digital Health Agency has sorted out many of the governance issues and is becoming a more transparent, engaging enterprise. An effective implementation strategy will genuinely address the barriers to engagement with the MyHealth Record and not just sprout benefits. I believe there is hope for Australia’s digital health record.
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.”
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.
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.
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, as always, some 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.”
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:
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:
Law enforcement purposes
Health provider indemnity insurance cover purposes
Public health purposes
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.”
Health Minister Sussan Ley has announced that “the Abbott Government will deliver a rebooted personalised myHealth Record system for patients and doctors that will trial an opt-out, rather than opt-in, option as part of a $485 million budget rescue package (…).”
I like the word ‘rebooted’, as it implies a fresh start and that is certainly what the Australian e-health records system needs. ‘MyHealth record’ sounds better than PCEHR too. But many questions remain, including the most important one: will clinicians use the renamed system once it’s opt-out instead of opt-in?
The legal stuff
Clinicians have concerns that have not yet been addressed.
For example, 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.
When healthcare organisations or practices cancel the PCEHR participation agreement, seven of the fourteen clauses survive termination, including liability of providers.
Other concerns are that the Minister of Health may make or change PCEHR rules without legislation and the Department of Health can change the participation agreement at any time without the need for input from doctors or patients.
If the Health Minister is serious about engaging clinicians, here are some of the issues that must be resolved:
The purpose of the PCEHR (myHealth Record) must be clear
The legal framework should be reviewed, and any changes must be agreed upon by consumers and clinicians
If consumers want to opt out at any stage, they should have the option to have their data removed from the system
If providers opt out at any stage, their liability should end as well.
And that’s just the beginning. Here’s to hoping that the $485 million will be spent wisely.
In the ‘Blogging on Demand’ series you get to choose the topic. If you have a great idea you want the world to know about, feel free to contact me. Northern NSW GP and technophile Dr David Guest feels that one particular low-cost health-IT solution from New Zealand, called GP2GP, is worthy of more discussion and would make a big difference in Australia.
I admit it’s odd: Every time a new patient presents, the receptionist will see to it that a huge pile of paper notes ends up on my desk, often held together by paperclips or elastic bands.
I usually move the pile over to one side and look at it for a couple of days to see if the documents will disappear which, so far, hasn’t happened. Then, during a lunch break, I bite the bullet and trawl through the record, under while entering the data into the computer: allergies, medications, history, family history etc.
Important documents are scanned and shredded. When a patient at any stage decides to leave the practice, the receptionist prints the record and faxes it to the next GP. When it’s a large record she will make sure it’s held firmly together by paperclips or an elastic band before it goes to the post office in a big envelope.
Getting computers to solve this problem for us is an issue in Australia, because our IT systems don’t communicate. But in New Zealand and the UK they have found a way to transfer health records electronically. It’s called e-mail. Well, not really, but there are similarities.
Simply put, GP2GP is a software application that securely transfers an electronic health record from one practice to another, and automatically stores information in the relevant sections of a patient’s record.
Dr Guest: “Although I support the PCEHR one cannot help but feel frustrated by the slow pace of change and the limited functionality it provides. In recent times I have become much more interested in simple low-cost achievable IT solutions.”
“It would be great to emulate the UK and NZ ability to transfer medical records from one practice to another. Auto-populating medical lists, health summaries, allergies and vaccinations will save time and reduce medical errors. New Zealand has reportedly done this for less than a million dollars. Given the lack of progress in Australian health IT, it seems a no-brainer to replicate this.”
“Patients have a reasonable expectation and entitlement that information can be easily transferred to their new practice
RACGP e-health spokesperson Dr Nathan Pinskier says: “Australians legitimately change their GP and general practice for a number of reasons, for example because their GP retires, practices merge or people relocate. Approximately 10% of Australians move home each year. Patients have a reasonable expectation and entitlement that personal healthcare information held by their current general practice can be easily transferred to their new practice.”
“Transferring data via a physical medium, like discs and USBs, is problematic as they only work well between compatible systems. The PCEHR allows for the sharing of some clinical documents via a point to share environment, however this requires the patient and both the old and the new general practices to be registered with the PCEHR.”
“Furthermore the documents that may be available for transfer may not always be the information required by the new general practitioner, as documents can be restricted or removed by the consumer. The PCEHR is after all, by definition, the consumer’s personally controlled healthcare record.”
Dr Guest: “The elements enabling this transfer of data already exist in Australian electronic health records software. Most products can export their data in machine readable formats such as XML. They can also import an XML-file produced by their own software from other practices. There needs to be agreement on a standard structure for the XML-data and this is what NZ and the UK have achieved. We should use their format and then enforce it.”
The process of posting paper records and manually entering data is inefficient. Patients First, the New Zealand not-for-profit organisation responsible for introducing GP2GP, states on its website: “This results in a significant safety risk each and every time a person changes their GP.”
Indeed, when doctors or staff enter data manually, there is the potential to make mistakes.
“Having this knowledge at their fingertips will lead to improved clinical decision-making
According to Patients First, there are many benefits:
“With GP2GP, general practitioners will have detailed knowledge of their new patient’s current medication, allergies, current problems and past medical history. Having this knowledge at their fingertips will lead to improved clinical decision-making so that the right care can be provided at the right place and at the right time thus reducing the risk to patient safety during the handover of care.”
Lastly, a benefit that has been claimed is a reduction in the number of duplicate tests.
“The major issue is developing an agreed set of standards for both the content and technical requirements for point to point transfer that can be implemented by any vendor,” says Dr Pinskier. “The RACGP Optimus project has made significant progress in relation to defining the content, however there is no national program to address and fund the technical transfer work.”
Some have argued that there is no business case for software vendors to develop GP2GP in Australia. In New Zealand and the UK the project received Government funding.
The reduction in workload may not be as substantial as we would like. GP Emma Dunning pointed out in New Zealand Doctor Magazine that doctors still need to review the imported data:
“Where I used to be demoralised by the huge pile of paper notes awaiting my attention, I am now demoralised by the stream of tasks on my taskbar, in red, saying ‘GP2GP notes imported, review’. My lightbulb may never be green again!”
A 2011 pilot study from the UK found that the record transfer system was valued, but that there were issues with the quality of the records, which required significant resources to rectify. The New Zealand version also experienced teething problems.
Urgent national priority
Nevertheless, the adoption rate in the UK is 62% (2013), and in New Zealand 93% (2014) with 30,000 transferred records per month.
“I think it is excellent and it saves a lot of time
GP Dr Richard Medlicott, who is a member of several e-health task forces in New Zealand, is content: “Personally I think it is excellent and it saves a lot of time. It’s even better since we increased the file limit from 5 MB to 20 MB. I can’t see any reason you wouldn’t use it.”
According to Dr Pinskier making our systems talk to each other has become an urgent matter: “To support efficient healthcare delivery and continuity of care, we need an agreed mechanism for the safe and efficient transfer of clinical information. One would argue that this is now an urgent national priority.”
It seems GP2GP could be a cost-efficient improvement in Australian healthcare, but the question will be: who pays?
Thanks to Dr David Guest for the topic suggestion.
Physitrack is an iOS/Android smartphone app that helps patients complete their prescribed exercises instead of having to worry where they left their paper handout. It allows health care practitioners to prescribe over 1,000 clearly narrated exercise videos. To download the app patients pay $1.29. Practitioners pay a subscription fee. In this guest post Nathan Skwortsow, co-founder of Physitrack, explains the benefits.
The idea for Physitrack came about in late 2011, when a relative of one of our co-founders was given an unclear paper home exercise handout after a knee operation.
This greatly reduced his motivation to do his home exercise program, unnecessarily prolonging his post-op rehabilitation process.
We got together and decided that there should be a better way to encourage and track patient adherence and worked with health care professionals around the world to find a solution.
A study published in The Lancet in 2012 found that musculoskeletal conditions were the second greatest cause of disability in the world, affecting over 1.7 billion people, and putting billions of dollars of pressure on economies, worldwide.
Yet a consumer survey conducted during 2014 in Australia found that less than 30% of patients adhere to home exercise programs prescribed for them using traditional, paper-based methods.
In 2014, home exercise prescription platform Physitrack launched in Australia and The Netherlands. Physitrack features over 1,000 clearly narrated exercise videos and pre-saved programs to allow practitioners to create exercise programs for their patients.
Between 200-300 new exercises are added each month, and practitioners can either request new exercises to be recorded or upload their own exercises for even greater flexibility.
Where drawings fail
Until recently, practitioners have had no choice when prescribing home exercise programs other than to give patients paper handouts carrying printed instructions and either stickmen drawings or, at best, difficult to decipher photos.
While these can be adequate for explaining basic exercises, they are limited in their ability to explain the correct technique for more complex exercises. They also frequently prove inadequate where patients have a limited understanding of exercise techniques in general.
Meanwhile practitioners, hospitals and other health institutions using these traditional home exercise prescription methods have no way of gaining insight into patient adherence, progress, pain experienced during exercises or other, more specific feedback.
Better treatment & valuable data
The use of exercise videos in exercise programs has been shown to be more effective in encouraging confidence and motivation as well as in achieving performance accuracy. This in turn leads to increased patient adherence, which helps to improve treatment outcomes.
Physitrack provides practitioners with real-time insight into patient adherence, progress, pain levels and feedback, enabling them to provide patients effective support.
Built-in Patient Reported Outcome Measure (PROM ) surveys offer practitioners, and hospitals in particular, previously unavailable insight into the effectiveness of rehab programs, enabling them to optimise processes to help improve treatment outcomes and .
To create a more efficient clinic, Physitrack is also about to connect to popular patient management systems including Cliniko, TM2, Gensolve and PPMP for instant data sharing between platforms. The same connections are possible with hospital legacy systems.
Patient ease of use
Patients complete their prescribed exercises via iOS and Android smartphone apps instead of having to worry where they left their paper handout. Tablet and desktop computer versions are also available.
The app allows the patient to provide their treating practitioner with direct feedback after each exercise, which makes patients feel better supported and getting more out of their treatment.
Physitrack sends patients reminders to keep them motivated and on track with their exercise program.
For patients unable or unwilling to use an internet based platform, Physitrack allows practitioners to print out exercise programs in a form still preferable to most traditional paper-based formats.
Nathan Skwortsow is co-founder and CTO of Physitrack Limited. A subscription is priced at $29 p/m or $299 per year with professional discounts for SMA, ESSA, CAA and COCA members. For more information visit the Physitrack website.
Open source medical technology has a long way to go. Yet, it has a lot of potential. In this guest post US-based tech writer Nicholas Filler describes alternatives to the often-expensive IT systems used in healthcare.
According to the Federal Long Term Care Insurance website, home care in the US costs on average US$29,640 per year. This is an outrageous number when it comes to basic care within your home. But there is technology on the rise that could help patients at a very low cost, and it’s coming from the open source community.
Open source is defined as ‘any program whose source code is made available for use or modification as users or other developers see fit – open source software is usually developed as a public collaboration and made freely available.’ This means that anyone can download or modify the code as they see fit for any project that they are working on.
The software is useful in the medical field because it can be modified for any individual or illness. By using this type of software in combination with open source hardware, low-cost medical accessibility is now becoming a reality.
The Raspberry pi is a single board, US$35 computer that was introduced by the educational charity The Raspberry Pi Foundation, and was formed within the United Kingdom. The computer was introduced for production February 29th, 2012, and has been a staple of the open source community. There are a variety of websites that offer on-site tools in which you can learn how to develop for it, and some blogs have built strong communities based around this technology.
After the launch of the Raspberry Pi came a device called the E-Health Sensor Platform, launched in 2013. Although it is clearly stated that it should not be used to monitor critical patients and has no medical certification, it was designed and built for measuring biometric data and experimentation purposes. This would allow individuals to start a small health informatics data pool regarding their personal health and allow them to monitor not only their daily activity but their lifestyle.
Big data is still hard to filter and compile into useful information. Most of the time it ends in convoluted excel sheets or something difficult to read, especially if you were giving the information that you compiled from a Raspberry Pi to your doctor. Doctors might not be familiar with the type of data that it is producing, when compared to certified medical machines. But at least it’s a move in the right direction.
Technology is becoming integrated in our daily lives and free programing languages like ‘R’, which are designed to handle heavy statistical data, are allowing people to understand these large sets of data. ‘R’ is a programming language that anyone can learn, and like the hardware, is completely open source. This would allow various medical professionals to personally tailor their data sets according to their needs. Ideally this would make reading and understanding data sets easier.
Integration with open source programming and hardware could greatly improve data analysis, and drastically affect the way long-term studies are conducted in terms of cost and time. For example, these types of programming languages have been used to improve spending on inefficient processes and equipment.
As the medical field continues to rapidly change, expensive medically licensed technology used to monitor patients will remain the standard. But low-cost solutions are becoming a possibility and should be looked at with hopeful admiration. These devices might not be certified at the moment but they can compile a variety of valuable information at a fraction of the cost.
Whether it be an education project for home or monitoring important vital signs for research, open source systems can be used in various healthcare settings. Only time will tell how these projects develop, but hopefully they will make medical technology less expensive in the near future.
Nicholas Filler is a technical writer and lives in Idaho, US. He has in interest in technology, education and medicine. He studied English at Boise State University.
In healthcare we’re often confronted with poor quality software. Bugs and security issues are common, and the design is usually not intuitive. I spoke to Frank (not his real name), an insider in the health IT industry. Frank gives us an interesting look behind the scene and seven strategies for developing or implementing new software.
“Any industry can be a target for poor software,” says Frank, “but healthcare certainly has its fair share. Believe it or not, medical software is unregulated. Medical software that runs on a computer, mobile phone or tablet does not fit the definition of a medical device in section 41BD of the Therapeutic Goods Act 1989, as they were not intended by the manufacturer to be used for therapeutic purposes.”
“How many software developers have clinical employees? Do these employees have input into design or are they there to sell the dream?
“There is a serious gap between software design and the real-world application. Often software developers do not fully understand what is actually required by the healthcare industry to support the services that they provide.”
“Far too often, developers over-promise and under-deliver. What software can do often does not live up the expectations of the customer. How many software developers have clinical employees? Do these employees have input into design or are they there to sell the dream?”
Causes of poor quality
Some argue that developers should test their product better before it can be used in patient care. Is this an issue?
Frank: “Quality must be incorporated into the entire software development life cycle, from inception through implementation and this is not always happening.”
“A lot of the actual coding occurs overseas, in countries like India, where the employment costs are much lower. Code may be written cheaply and quickly overseas but it isn’t necessarily quality code.”
“Testing is often an afterthought and done quickly due to time constraints
“Testing is often an afterthought and done quickly due to time constraints. The most crucial functionality usually gets tested but bugs can still slip though.”
“On the other hand, sometimes the client is not specific about their requirements. This could be a result of not engaging the organisation to understand what requirements need to be met. How often are clinical and other front line staff asked what they need before software arrives?”
Talking about client requirements: Let’s look at the Australian national E-health records database, the PCEHR. The Government wants to use the data and eventually save money (even though so far they have wasted millions of dollars on the project). Consumers want full control of the data, and doctors need a reliable, safe, secure and easy-to-use tool. Is it possible to develop a national product that ticks all these boxes?
Frank: “Highly unlikely. There are too many competing interests and egos with those that have been involved. In the early days, NEHTA was an interesting organisation to observe. It was obvious that they didn’t understand the complexity of system interoperability or consumer expectations on how information is to be shared and stored.”
“Fear, uncertainty, and doubt also play a part in the slow uptake of the PCEHR
“The reality is that software used in healthcare is effectively a closed shop, and it’s difficult for different systems to be integrated. Once you’ve bought a solution from one vendor, it’s incredibly difficult – but not impossible – to walk away from it.”
“Also in recent years, there has been a seismic shift in patient expectations overseas and we’re starting to see the rise of patient advocates and patient hackers. These are savvy people who aren’t going to sit back and be a passenger in their personal health journey.”
“Fear, uncertainty, and doubt play a part in the slow uptake of the PCEHR. Some providers don’t want patients to be able to access reports on the PCEHR, others are concerned that patients may choose to make some information not sharable or viewable which may compromise care. I think the truth lies somewhere in between.”
7 tips to avoid fiascos
I asked Frank what doctors, healthcare managers and business owners can do to avoid disappointments. Here’s his list of 7 tips:
Be as clear as possible about your expectations and needs. Make sure you discuss the features you’re looking for and categorise them: absolutely essential, must have, good to have, nice to have, can live without. Ask how many features the software developer can provide in your first 3 categories.
Make sure that the software vendor understands your requirements. Get them to provide their understanding in writing so that you can see that they’ve understood.
Does the organisation hold certification for both ISO 9001 (Quality Management Systems) and ISO 27001 (Information Security Management) across all business units?
Find out where the software is being developed and supported from.
What is the quality like? Is it secure?
Don’t pay anything to a software developer before you are sure what you’ve been given is fit for purpose and what you asked for.
What contingencies are in place if the software fails to deliver as promised?
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.”
Healthcare around the world is plagued by software problems. To give just a few examples:
Issues with the Obamacare website caused user frustration, but also security breaches. Personal information was disseminated over the internet, affecting millions of people.
Closer to home, the Australian PCEHR has difficulties getting off the ground because of concerns at various levels. Major security problems with the Australian MyGov website – which also gives access to our eHealth records – were exposed by a researcher who was able to hack into the secure part of the website.
Queensland Health has an unfortunate track record of software problems, most recently with Metavision, an intensive care software package that created medication errors.
Why is the healthcare industry prone to these software debacles?
I caught up with Australian health IT experts to get some answers. In this post I’m talking to Sydney professor Enrico Coiera, who has extensive experience in the field of health informatics and bioinformatics. He’s got interesting things to say about eHealth, the PCEHR, and Telstra’s plans to enter the healthcare market.
What’s the cause of e-health disasters?
Coiera: “Today in Australia there is still, inexplicably, no governance system for e-health safety. No one is looking at your GP desktop system to make sure patients will not be harmed through its use.”
“Yet, look at what has been achieved in the airline industry, and then compare their safety governance processes to those that we have in healthcare IT. A functional and effective governance system needs a rapid reporting arm, and a rapid response arm.”
“If something goes wrong it must be reported, and rapidly communicated back to all other users who might be experiencing the same issue, and then quickly repaired.”
“The other thing is of course that while we are fiddling and doing nothing, clinical software is getting more complex, with more functions and more opportunities for failure, and as a result, patient harm.”
“In the past, software failures weren’t always seen as a patient safety issue. IT glitches were regarded as annoying, perhaps time-wasting.”
“It’s only in the last decade that we’ve realised that unsafe IT makes for unsafe care. And now that we know that e-health is a patient safety issue, people are not putting up with it anymore. They do want to know that their clinical systems are safe.”
Man vs machine
I often wonder if software solutions are tested thoroughly enough before they are introduced in the clinical setting, but according to professor Coiera I’m underestimating human factors as a cause for errors:
“I’m not sure that improving software testing is the only challenge with e-health safety. Having said that, in Australia there are no requirements on testing for clinical systems, so we don’t know whether or not even this basic requirement is being met by software vendors.”
“My biggest criticism of the e-health industry is that their software is often not very innovative.
“Keep in mind that there is no such thing as a safe system: While about 50% of e-health incidents are primarily technical in origin, the other 50% of incidents are caused by a human factors, for example someone selecting the wrong medication or medication dose from a drop down menu.”
“This means that to have a safe system, both our software needs to be built to appropriate standard, but also that clinicians must be trained to be safe users of the technology. Implementations of software in clinical settings also need to be carried out with an eye to risk reduction.”
“My biggest criticism of the e-health industry is that their software is often not very innovative, and not designed with human factors in mind. It is hard to comprehend how unusable some clinical systems are, with too many clicks to achieve even simple tasks, and user interfaces simply adding in new functions and becoming complex over time, rather than focusing on clarity and simplicity in design.”
“This lack of innovation is probably a function of the size of the e-health market, and the ability of vendors to lock in customers by making it hard to move from their system to others. Innovation comes from true competition, as well as customers who reward innovation.”
How do we fix the PCEHR?
Many people are calling for a rethink of the PCEHR, saying that a massive data repository is not the answer.
Coiera: “There has never been a strong case to develop a centralised national record. The main issue with the PCEHR design is that its explicit clinical purpose has never been clear.”
“GPs should have access to hospital patient data, but that can happen by logging on directly to the hospital system.
“There are actually many compelling reasons to move data around the system, using more interoperable records and networks. GPs for example should have access to hospital patient data, but that can happen by logging on directly to the hospital system, not looking at some extract of the data in a central repository.”
“Wasn’t that the whole point of the Internet, for goodness sake? Data needs to be fluid, it should move around.”
Big business vs big government
Frustrated with the government’s PCEHR, some are hoping big business will solve the problems. Telstra has announced plans to get involved in telemedicine and e-health. The question is whether this will be an improvement, as Telstra has had its fair share of software malfunctions – including at least one security breach affecting one million BigPond customers. But Coiera is positive:
“We should welcome big companies, it’s good for us. The government’s job is to protect privacy and security through regulation and law. The government should stick to what it’s good at, and leave software development to industry. Government is used to being in charge and driving change top down, whereas businesses are usually better at listening to the client.”
“I think we will be seeing that government gets out-of-the-way in e-health, while still protecting the rights of citizens via law. With the arrival of industry should come competition and innovation. The companies that listen best to what we want as clinicians and consumers will win.”