An integrated network of electronic medical records is the destination, but it will be a long trek beset with obstacles
Doctors and patients railroaded into the federal government’s My Health Record “opt-out” trials have just a few more months to cement the case for a more-or-less compulsory digital future.
The trials will run until the end of October, after which an independent evaluator will weigh up their performance and hand a report to the Federal Department of Health by the end of November.
GPs are on board, even if some resent having to upload patients’ shared health summaries under threat of losing lucrative e-health incentive payments under new eligibility rules introduced in May.
And patients in the two opt-out trial areas in NSW and Queensland appear to be going along with the idea, despite what some consider to be the high-handed way the scheme entered their lives when the My Health Records were created in mid-June.
“A lot of people thought the communications they got in the mail were pretty arrogant, and they were, but I guess it was necessary to get the system up,” Dr Darryl Chamberlain, a GP in the Nepean Blue Mountains PHN region, one of the two sites, told The Medical Republic.
Some 450 GPs serve a population of more than 360,000 in the PHN zone, an expanse of suburban sprawl including the regional centre of Penrith, as well as mountain country west of Sydney.
At the outset, doctors say, some patients had feared their clinical notes would become publicly available or were suspicious about government intruding on their privacy, while others had found it complicated to negotiate the MyGov website for their initial sign-in.
But very few have elected to shut down their records, an important victory for the system which replaced the failed opt-in model known as the Personally Controlled Electronic Health Record (PCEHR) which was launched in 2008.
Dr Chamberlain observed that attitudes were more relaxed among younger patients who had grown up in the digital era, and many were now proactive in uploading information and viewing their records.
“This is the future. They see it as adding to the completeness of their healthcare. They want to be covered if they go travelling and, now that I have reduced my hours, if I’m not available,” he said.
“If it is done gently, and if the funding is continued, it should work.”
The federal government has allocated $50.8 million over four years for the opt-out trials.
The money covers the cost of IT and other systems, training and education for patients and healthcare providers.
Donna Sedgman, the Nepean Blue Mountains PHN’s senior manager of practice support and development, said the harnessing of GPs under the ePIP rules was crucial to the scheme’s success. But other health practitioners were largely absent, lacking not only a financial imperative but also the necessary computer power.
“I also think (GPs) are starting to realise it’s not going to go away, and there’s a greater commitment to consumer communication because they know patients are going to be able to see the information,” she said.
“Specialists and allied health are not as advanced or sophisticated in their use of clinical software and they’re not generally as outcome-driven as general practice is,” she added.
Pharmacies are the exception. Only about half of the 89 pharmacies in the region have software that is compliant with the My Health Record system, but those that do have leapt at the opportunity to add medication dispensing records to patients’ information.
“We’ve seen in the past few weeks a rapid increase in uploads of dispensing records. It’s great to see that level of acceptance and wanting to utilise the system, and now the number of views is starting to come on,” Ms Sedgman said.
“There is enormous potential for home medicine reviews, residential-care medication reviews, and for patients being discharged from hospital, so (doctors) can cross-check what the patient says and what the discharge medications are.”
While allied health practitioners saw no cost-benefit for them in the scheme, most specialists in the PHN region were either not computerised or did not use conforming software.
“That’s a challenge,” Ms Sedgman said. “From the GP perspective, we’ve got practices now who basically really only want to deal with those who are connected, because the load of paper-based faxing and carrying on is not something the more progressive practices want to engage with.”
The manager of a large Blue Mountains general practice told The Medical Republic she did not know a single specialist who was linked to the My Health Record system, and local hospitals were not using it to post discharge summaries. However, a Nepean Hospital spokesman said clinicians had access to My Health Record since mid-July.
In Victoria, an “opt-in” trial is under way in which the Ballarat Health Service is offering all patients assisted registration to My Health Record upon their admission to hospital or when they visit the emergency department, with a modification of hospital IT infrastructure to upload discharge summaries to the system when they leave.
Jason Trethowan, CEO of the Western Victorian PHN, said his organisation came up with the idea after concluding that a slow and deliberate process, starting with change management at hospitals, would be the key to establishing an effective health record system.
“The big bang approach used in the past just doesn’t work,” he said.
Another opt-in experiment has been launched at more than 20 IPN general practices in Perth and one in country Western Australia, intended to encourage more clinicians to take up and share electronic records.
The Western Australian trial is targeting patients with chronic disease, using software modified to enable My Health Record access by specialists and allied health professionals who would otherwise not be able to tap into the system.
Based on the outcomes of the four trials, the government says it will consider whether a move to a national opt-out system is the most effective way to increase participation by individuals and healthcare providers.
Otherwise, it will continue with opt-in registration, possibly adopting some of the innovative approaches being tested in western Victoria and Western Australia.
A decision was expected in the first half of 2017, a health department spokeswoman said.
The RACGP and the AMA have objected strongly to the financial pressure on GPs to upload a proportion of patients’ health summaries each quarter, labelling the requirement as premature and unfair while the record system has little clinical value.
“We have made the point consistently over the past four or five years that the national health record should not be the sole priority. The first priority should be secure messaging,” Dr Nathan Pinskier, chair of the RACGP’s eHealth and Practice Systems Committee, said.
“If you can get interoperable secure messaging, with GPs referring to specialists and allied health, and it all goes electronically, consistent with Malcolm Turnbull’s digital transformation policy, you have the foundation for point-to-point messaging as business as usual.
“Then people stop using pen and paper, and they are much more likely to send information to a shared health record.”
Dr Pinskier said only about half of GP software was suitable for advanced clinical functions, not as a result of flawed software but because clinicians had had no input in the design and development and competing systems were not interoperable.
There was also an entirely predictable lag in doctors updating software to versions that could connect with electronic record systems, he said.
“The problem is, your core business is diagnosing, treating and managing patients. If you do a software upgrade and it crashes your system, loses data and you are down for a day, it can be disastrous.”
While the health department has oversight of the four trials, the records system will eventually come under the wing of the new Australian Digital Health Agency, launched last month.
Richard Royle, who was acting CEO of the agency’s forerunner, the National Electronic Health Transition Authority, said last month the record system was starting to gain traction.
“(Key performance indicators) in the past have been about the number of people in it. But the number of documents uploaded are to me an input. The output needs to be how many times it is actually being used by providers and consumers, and we are seeing that ramping up quickly,” he said, addressing a conference of clinicians and health IT experts in Melbourne.
A plan to develop standards for system interoperability and secure messaging was expected to be ready by March next year, he said.
The advent of the Digital Health Agency, and the appointment of new chief executive Tim Kelsey, an advocate of “open data” during his tenure as head of England’s National Health Service, has been welcomed as a chance to usher in a new spirit of cooperation and transparency in health IT governance.
“You assess the maturity of a process by its ability to discuss issues before they happen and after they have gone wrong,” Dr Vince McCauley, chief medical officer at Telstra Health’s Emerging Systems, told conference delegates.
“So I am hoping the transition to the new digital agency will step up the level of maturity and we can have conversations in a much more robust way.”
Dr McCauley emphasised that doctors should be aware that IT systems could create errors.
“So many clinicians coming into the workplace now, and certainly those who have been in the workplace for a long time, don’t have insight into how computer systems can go wrong and the sort of things they should be looking for, so that oversight we expect clinicians to be able to exercise is not happening very effectively.”
Dr Mukesh Haikerwal, a former NEHTA clinical lead, said he had concerns about patients being enrolled in the My Health Record system without their knowledge and, as a consequence, failing to apply to security safeguards to their information.
“I’ve had hundreds of people who don’t know they have got a record, and if they do know, they don’t how to get onto it and put the safety guards on, and those who do get on never look at it again because there’s nothing there.”
He was also annoyed by system software sending notifications that information had been uploaded to patients’ records, when nothing had been entered.
“That tells us it’s an incomplete system, you cannot trust the software. It is inaccurate,” he said.
“To make it a useful medium, there has to be a whole stream of work to join up the entire health system. This is one tool, and it should not be seen as the only tool.”
Among the many lessons learned in the NSW trial, the big one was about the need to devote more time and resources to raising community awareness and acceptance, particularly among older people.
“With time, we realised we really needed to reach the consumer and allay their fears,” Ms Sedgman said.
“When the letters were going out to consumers in our region, there needed to be a direction as to where they could seek information, face to face.”
The government also needed to match the commitment being demonstrated by GPs in the field and PHN staff, most of whom were on short-term contracts, she said.
“There needs to be more consideration of the workforce in this primary health space,” she said.
“If you want transformation for better patient care in primary health care, you have got to invest in the skill and competency of the staff and offer a level of stability.”
The empowering effect on patients of a functioning electronic health record was a main finding of a 2013 research project on patients in rural Tasmania who each had four or more chronic and complex health conditions and multiple health providers.
University of Tasmania researcher Helen Almond, a general practice nurse, helped the 19 patients set up their PCEHRs so they could record their goals and progress in new lifestyle activities such as strength training, dancing and walking.
“Not one of them dropped out,” she said. “They were all absolutely passionate about the project and about the value of the PCEHR as a communication tool. Every one of them wanted to share their health information and wanted to be able to see their results and play a big role in it.”
It was disheartening, however, that when the patients asked their health providers to upload information to the PCEHR, almost all providers declined.