Most patients attending outpatients’ clinics or emergency departments across Ireland will be familiar with the cumbersome hospital charts that remain part and parcel of their hospital experience.
They contain everything from patients’ address labels attached to every new test result, drug prescription or X-ray to the handwritten notes that medical personnel add to share patients’ progress with their colleagues.
In an era when most of our personal information is digitalised, it seems extraordinary that so many of our health records are still paper-based. Yes, GPs have electronic health records (EHRs) for their patients but the problem is that this treasure trove of information on current complaints, medications and past diagnoses cannot currently be shared with often outdated hospital-based computer systems.
Ireland is the fourth last country in Europe to embrace the widespread introduction of electronic health records (EHRs) for patients, according to Prof Martin Curley, professor of innovation at Maynooth University, who was appointed head of digital transformation and innovation at the Health Service Executive in 2019.
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Some say the pandemic has slowed progress on the introduction of electronic health records in this country, while others argue bureaucratic inertia within the Irish health system is the key reason for the delay.
HSE plans to introduce digitalised patient records date back to 2010, if not earlier. The business case for EHRs was approved by HSE leadership in 2016 yet their e-health website has no new information for the past four years. The EU Digital Innovation Framework aims to have EHRs in 90 per cent of European cities by 2030.
“There was an enormous missed opportunity when everyone got their Covid shot to have an individual health identifier which could then have been populated with data from GP visits and within two to three years we’d know the health of Ireland,” says Charles Larkin, director of research at the Institute for Policy Research at the University of Bath and former adviser to Dr Michael Harty, retired Clare TD and co-author of the original Sláintecare report.
Legislation for the individual health identifier was introduced in 2014 but has not yet been developed. Harnessing Digital, the new Digital Ireland Framework, launched in February 2022, pays scant attention to EHR, yet the so-called national electronic patient summary was listed by the Sláintecare implementation plan in 2018 as a crucial element of Ireland’s national e-health policy and a key area for the modernisation of the health and social care system in Ireland.
“E-health is a key part of Sláintecare. Dr Harty used to say that digital health was the magical dust that would make Sláintecare work. It would help manage our health services better than we are doing,” says Larkin.
The two main benefits of EHRs are that patients would not have to share their personal health details over and over again when they go to a hospital – and, crucially, digitalised health records would mean chronic diseases, medication records, etc, would be available instantly to ambulance personnel in a health emergency. The other benefit is that a public-health system could be planned better with a more comprehensive understanding of the burden of disease across the country.
Not only did the rollout of vaccination against Covid-19 proceed reasonably successfully over a digital platform, but new, fast-tracked legislation which allowed doctors send patients prescriptions securely to pharmacies via e-prescriptions simplified prescribing practices and prevented errors due to handwritten scripts. So, why haven’t examples like these given the health system more impetus to introduce EHRs now?
Some experts argue that privacy and data security remain strong concerns among patients – particularly after the cyberattacks in May 2021. Yet a Health Information Quality Authority (Hiqa) survey in September 2021 found that 86 per cent of people would like all healthcare professionals involved in their care to have access to their digital records. And 99 per cent of respondents said a hospital doctor should be able to access their health information electronically without their permission when they are unconscious. Ninety per cent said they trust their GPs to keep their information safe and secure and to share only relevant information.
“People will always have concerns about security and privacy and this will be a long term continuous process. Cybersecurity must be absolute sacrosanct. The challenges [to introducing shared patient digital records] are more about interoperability so that different IT systems can talk to each other through a middle layer,” says Dr Donal Bailey, director of critical innovation at Centrix Health, which runs 60 GP practices throughout Ireland.
All patients at St James’s Hospital, Dublin, Tallaght hospital, the National Rehabilitation Hospital in Dún Laoghaire and maternity patients at Cork University Hospital, the Rotunda Hospital and University Hospital Kerry have electronic health records. But according to Prof Curley, 85 per cent of Irish hospital records remain paper-based.
His response has been to set up the Irish Digital Health Leadership Group (IDHLG) with a number of other healthcare and information technology experts. “This coalition of 60 experts from public and private practice, academia and patients was set up to fix the future of healthcare in Ireland. It’s too big to be left to the HSE and the Department of Health,” says Prof Curley
He believes that by introducing EHRs to patients attending their local pharmacy for a rapid health assessment, 90 per cent of the population could have a personal digital health record within two years at the same cost of a PCR test for each person.
“We want to leapfrog [over the obstacles] and rather than put EHR in all the acute hospitals, we want to put one in each person’s hand. Each person could have the results of this rapid health assessment delivered to their device within 24 hours with digital therapeutic advice to help them improve their health,” says Curley.
The reason for this bottom-up approach is that pharmacies are an easy access point and that once individuals’ EHRs have been set up, they can then be linked to their records at their GP surgery and ultimately linked to future hospital records.
The IDHLG is currently testing the introduction of this approach, partnering with Centrix Health GP network and Clanwilliam GP practice software supplier. “GPs can link into it easily through their practice software. They will be able to import patient records, test results and patients’ prescriptions. We are currently trialling it in departments in Letterkenny and Portlaoise hospitals,” explains Curley.
The Patients Know Best app, founded by Mohammad Al-Ubakdli and currently used across the UK, is the one currently being tested in Ireland. “The GPs, consultants and social care providers input the information, which is legally owned by the patient. We encrypt it. There is no advertising, no selling of data, just storage,” explains Al-Ubakdli, who set up the Patients Know Best social enterprise in the UK in 2008.
Dr Bailey acknowledges the countrywide introduction of electronic health records would require a broad health and tech literacy campaign. “The biggest gains will be for people who are already managing a chronic health condition, rather than someone who needs an antibiotic for a sinus infection,” says Dr Bailey.
It is estimated that chronic health diseases rather than acute illnesses will represent 70 per cent of the global disease burden in 2030.
Prof Curley suggests that the next step is have larger trials with 500 patients from now until September and then with 10,000 patients in late 2022/early 2023 before going to the HSE and the Department of Health with recommendations and the business case for its introduction. He believes such EHRs could be linked to fitness and wellness devices and HSE patient apps to transform Ireland’s approach to healthcare from a “sickness system to a wellness system”.
He says that although his approach to introduce EHRs to patients in this way is not yet HSE policy or strategy, “the Hippocratic oaths has been misinterpreted and rather than do no harm, it’s do nothing. There is risk avoidance, a reliance on external consultants and a lack of accountability for delivery. The IDHLG is taking responsibility to deliver this.”
