7 March 2018 / 9:00 am
The patient takes charge – enhanced care with Digital Health technologies
It is an exciting time for healthcare in Jersey. The plans for the Island’s Future Hospital are being finalised and a new digital health strategy has been announced. Funding for the hospital has been agreed and new health technologies are already under evaluation to position Jersey’s health service at the forefront of medical care. A fundamental shift in the way that patients’ health data are recorded, stored and shared will empower patients to have greater control and interaction with their personal health information and care providers.
Paper to digital
Medical notes have historically been written on paper, stored in folders and archived in a basement. With computerisation, a considerable amount of data is now recorded digitally. There are two main electronic health record databases used in Jersey. General practitioners have software called EMIS and in the General Hospital there is a central data system called TrakCare run by Intersystems. There is also a myriad of other health record systems being used in the Island run by health providers such as pharmacies, private medical specialists, physiotherapists, midwives and community nurses. Unfortunately, these health systems do not communicate directly with each other. This means that quite often a health provider does not have full access to the information on the care that an individual is receiving. A lack of shared records can only result in poorer standards of care.
It’s my data!
Throughout the world, there is a move to change the way that health data is controlled, and patient ownership of health data is fundamental to make this happen. Why is it that when we visit our general practitioners we can’t read our own medical notes? In hospitals, things are just as difficult – clinic letters, blood tests, results of biopsies, even data from digital device recordings are not routinely available to the patient unless specifically requested. This is wrong. Not only should the data belong to the patient (as it is their personal health information), but the person has usually paid for the medical service in the form of taxation or private medical care. In addition, most hospital electronic health record systems are designed around the institutional needs (focussing on administrative tasks and billing), rather than patient care. Patients have little access to the information stored about them and are therefore unable to correct any factual errors that have been recorded. Errors in healthcare records will also lead to worsened care, yet without patient-review, physicians often are unaware of the mistakes.
Similarly, as a patient moves from place to place their medical information needs to travel with them. When patients are assessed by new medical teams without full access to their health data, physicians often have no choice but to repeat some tests and investigations. In the USA about 10% of tests are duplicates as earlier results were not accessible. Even more important is the ability to access medical information during an emergency. With health data stored in different silos, emergency department medics often have very little previous health data available to help them make life-saving decisions.
The future therefore has to be the development of patient-centred record systems allowing patients to store, view and share their health data. Large corporations as well as governments have recognised the importance of this and the UK health minister Jeremy Hunt has made a pledge to provide online access to health records to all NHS patients (at some point). Apple have announced a Personal Health Record system within its latest iOS release and is working with 12 hospitals across the USA to evaluate this, including Penn Medicine, Cedars-Sinai in Los Angeles and Johns Hopkins.
Jersey Care Record
So, what can Jersey do to not only enhance care in the Island but also capitalise on the growing Medtech business that is Digital Healthcare? Central to all of this is the recently announced Jersey Care Record – a patient centred record system that allows the many health software systems in the Island to connect to a patient controlled central record. The patient should become the data controller and choose who to share their health records with, much like people do when sharing information on social media. A hub and spoke system can then evolve with extra prongs linking in when new medical systems arise.
Interoperability and ease of connection are paramount. The Jersey Care Record must be a health repository, not a portal to a silo of data stored in EMIS or TrakCare, allowing true portability of health data. The hospital is also considering embarking on an enormous back-scanning exercise, converting patient paper notes into digital formats using technologies that allow rapid access to historic data as well as providing a platform for storage of future information. This will result in an extremely efficient paper-light health care system and will potentially feed in perfectly to the Jersey Care Record.
Digital Health opportunities
We are all aware of the ‘Jersey as a test-bed’ philosophy which is now being marketed as #SandboxJersey, but this opportunity particularly applies to healthcare. Our population of 100,000 is closely connected geographically, socially as well as medically and we have the advantage of not being constrained by the bulky size of the NHS. Digital health companies are now recognising Jersey as a go-to place for help with development and testing of new devices and software. Our team has been involved with a series of evaluative studies of new technologies, the results of which have been published and presented internationally.
The Jersey Care Record is fundamental to helping this testing process evolve. New digital health services can potentially link into the Jersey Care Record and patients can decide whether to enable the application. For example, a company might approach the Jersey Care Record with a novel blood sugar monitoring solution. Patients with diabetes would be notified that a new service was available and could then enable the link on their account if they wanted. The company could incentivise the patients financially or with enhanced care whilst they develop their software for commercial release.
Thanks to the speed of the internet, healthcare provision no longer needs to be a reliant on local providers. The NHS already uses remote reporting of x-ray images, particularly out of hours by sending the data to places such as Australia where the doctors are awake. Similarly, many digital health companies are providing internet-based analysis and storage of health diagnostic information. Jersey’s physical and financial position makes it an ideal locality to host, analyse and distribute this data. For example, a pacemaker manufacturer might use a Jersey health company to provide remote reporting of clinical events identified by the device. The clinical report can be generated and invoiced on Island, potentially cheaper and quicker than if using salaried health staff within a NHS hospital.
Online medical care
People are now more mobile, not just physically but also virtually, demanding 24-hour health service and attention. If you manage your own health data, why would you wait for days to get an appointment with a GP when you can access the doctor that you want, when you want – online. The digital health platform Babylon is one of a handful of companies leading the way with this technology and pushing back against those who favour a more conventional medical model. The company used Jersey as a test-bed to develop the platform which is now being used by the NHS. Interestingly however, the service is no longer available on Island as it couldn’t compete with the great access that Islanders have to high quality GPs in Jersey.
Digital Health in Jersey
We have already seen a steady succession of digital health companies established in Jersey in recent years as well as several external organisations using Jersey as a health testbed. Local companies such as Soulgenic, Zuri, Heart for Life and Total Solutions Group are leading the way on Island. So, what do digital health companies want? Quick access to relevant patients and people, an embracing research community to help innovate and publish academic papers, funding (of course) and potentially a location to base themselves. With the future hospital works hopefully starting soon, we would love to see a health campus starting to establish itself in the surrounding part of St Helier. The combination of our high-quality health facilities, backed up by the academic credibility of our research departments, the worldwide reputation of our finance and legal services would then provide the perfect go-to place for digital health companies.