Back in 2000, a GP colleague of mine Dr Amir Hannan had a special need to re-evaluate the way his practice interacted with its patients. Following the trial of infamous GP and serial killer Harold Shipman, Dr Hannan was appointed to help rebuild the practice’s patient-doctor relationships.
To do this, Dr Hannan and his colleagues set about creating a “partnership of trust”, involving absolute transparency in the way they interacted with their patients. Central to this openness was patient access to records on-line – a controversial innovation at the time.
Making time to help his patients understand how and why they should use this facility, Dr Hannan gradually saw the project snowball: patients not only accepted the partnership, they loved it! From the ashes of a real-life horror story sprang a community of citizen-engaged evangelists taking ownership of their local healthcare services.
One of the most passionate advocates of patient access to records was Margaret Rickson. Margaret sadly passed away this year but wanted her story to be told.
Suffering from a long-term lung complaint Margaret struggled to pick-up her repeat prescriptions without getting out of breath. After hearing about Dr Hannan’s initiative, at age 77, she took up IT lessons, acquired her first PC and became the first person in her community to order a repeat prescription online, making the most of the home delivery service.
The technologies used then, and now, to enable on-line access to NHS records were commonplace: web-based authentication (using credentials collected from the practice, around a consent process) and read-only rendering of records in a browser. The innovation was not technical but social, empowering patients to become more engaged in their own healthcare and to influence the way local health services are delivered.
Today, there are technical barriers to further innovation in access to health information & care. First in terms of systems’ requirements – in order to envision holistic digital healthcare we must create a new understanding of what a patient is, less a passive recipient and more a co-producer of care. Second in terms of legacy systems – in order to plug the current blind spot of what is happening to a patient’s health in between contacts with the NHS we must yoke existing clinical information systems that are built around healthcare organisations to the developing consumer health technologies that are centred on patients/citizens.
Although industry titans such as Google and Microsoft have tried to establish personal health record systems that interoperate with clinical information systems like GP records, the results have been underwhelming. Google Health was canned and Microsoft’s Health Vault is making slower progress than expected.
A typical NHS hospital IT department can have tens or even hundreds of different databases from a variety of vendors with only a handful of staff who know how to integrate them. Even the integrated offerings from large vendors are effectively delivered as a ‘kit car’. On the open source front, the largest offering is VistA (wikipedia.org/wiki/VistA) from the US Veterans’ Administration, built on 32-bit MUMPS, for which the programmers are a dying breed – a sufficient concern that the US Congress ordered VistA to be renovated.
Considering that the NHS is one of the world’s largest stores of ‘computable’ clinical information, you might expect industry-NHS partnerships to be forming a crucible of personal health record innovation. That has not happened yet.
Why? Well, in addition to the blizzard of legacy systems, harnessing the raw data as actionable information is not as easy as it first seems.
Let’s take a look at a typical GP record system: there are two main databases: the “demographic file” record containing facts about you such as your name, address, date of birth, NHS number (a unique person identifier) and the GP with whom you are registered; and a “journal file” of healthcare transactions such as a diagnosis code with the date it was made/updated, who made it, and a text-based “rubric” describing the code, which the GP can edit.
Diagnostic observations such as “COPD r/o” (shorthand for chronic obstructive pulmonary disease has been ruled out) can be found – so the information is not as ‘computable’ as it first seems. Furthermore, the traditional record-keeping culture is one of ‘note-to-self about my patient, and messages to colleagues’ rather than ‘information that my patient, I and other care-givers have recorded to support (self) care’ so you can see why some doctors might not want to open up the complete record if they have been using shorthand that might misinform or offend. But things are about to change.
From April 2015 the UK will mandate patient access on-line to GP records. This is a major step-forward that is likely to engage a new generation of patients taking a more proactive interest in their health data. This notion of “access” for consuming information about oneself is then likely to give way to what Health Informaticians refer to as “coproduction”.
Coproduction is the crossroads where actively-engaged patients meet with technological advancement and capability. The result? A better enabled and more empowered community involved in the generation of their own health information and the point where the dawn of personalised medicine breaks through.
Patient-driven notes could well be used to assist conversations with nominated health professionals, tapping into a new source of valuable information. No longer the blunt instrument of “how did you get on with your tablets?” where a course of antibiotics is stopped early due to feeling better – too late at a follow-up visit to change the situation. Instead, an on-line story, via an NHS app or SMS message loop, showing a drop-off in tablets being taken as quality of life scores pick up – so an alert is sent to the primary care team who respond with supportive messages encouraging the patient to finish their course of tablets, thereby reducing the risk of breeding drug-resistant bacteria.
At the same time, new healthcare signals will emerge from the booming market in wearables. Most of the major consumer IT companies are introducing smart-watches that provide ‘invisible’ recording of changes in heart rate, movement and skin temperature. Although not intended for clinical use, the data could help alert patients who seem to be running into problems.
For example, a patient with chronic lung disease developing a serious chest infection might have an increase in temperature and heart rate that signal the need for treatment. Early treatment in the community can prevent deterioration and keep patients out of hospital – lowering their risks of catching (other) infections, alleviating suffering, reducing their risk of premature death, and saving the NHS money that can be used to help other patients.
Yes, there are regulatory obstacles to overcome – for example the legal classification of clinical predictive algorithms as ‘medical devices’ (see EU Directive 2007/47). Thus health applications of smart-watch data may be restricted to the leisure/fitness market that is less regulated than healthcare. This could deprive patients with long-term conditions of much needed innovation.
Let’s look further into the future and imagine the ideal GP record. Simple. There isn’t one. Instead, personal health information is synthesised from multiple sources of data, ranging from wearable devices to multiple healthcare settings such as hospitals, general practices, community nurse visits at home, pharmacies, opticians etc.
This information may start to look more like a digital avatar than a filing cabinet. Indeed, it needs to have different ‘personalities’ in order to maximise the engagement of individuals in reporting changes in their symptoms and other personal health information that can guide care, while presenting the same information in different ways to health professionals.
Embryonic developments of this kind of interaction can be seen at www.clintouch.com where apps empower people to monitor their own symptoms and medication – critically, the ‘personality’ of the app is co-designed by the main users – patients.
There’s a long way to go from today’s smartphone apps to tomorrow’s health avatar but substantial benefits can be realised incrementally. Crucially, the ideas and the will to utilise technology in this way are already in place.
Of course, demand alone may not provide the environment needed to incubate complex innovations like the healthcare avatar. A social contract between public-sector service providers and the general public, similar to that underpinning the NHS, may be required to help protect and govern the advancement of holistic digital healthcare.
In addition, multiple nations and companies will need to work together if the algorithms supporting care are to ‘learn’ in efficient and transparent ways. Yes, this is a big vision. At a conference on the future of computing last year my colleague Herman Houser described health as the final frontier and I think this is great description.
In my opinion, the technical challenges that lie ahead for UK healthcare are dwarfed by the cultural and organisational issues on this horizon. Demands for healthcare will continue to outstrip resources, and even more so as populations age and treatment options grow.
But, remember those 1.7M NHS employees who care for patients like you, many of whom have the skills and motivation to solve specific healthcare IT problems. The equivalent of a NHS app store could mobilise this army alongside the UK’s thriving creative digital sector. A concert of trusted ‘apps’ swarming around a patient’s needs, broadcast by their health avatar, is no longer science fiction. It is time to rethink the delivery of healthcare, not simply to dress old healthcare with digital baubles.
Ends
Professor Iain E. Buchan is a Clinical Professor in Public Health Informatics at The University of Manchester and Director of the Health eResearch Centre of the UK’s Farr Institute for Health Informatics Research.
Twitter: @profbuchan @herc_farr
Notes to editors
The Health eResearch Centre (HeRC) is a publically funded organisation hosted by a consortium of Universities across the North of England to perform health informatics research. Led by Professor Iain Buchan at the University of Manchester, HeRC harnesses large scale health data for patient and public benefit by advancing computational thinking in health science, and developing e-health innovations embedded in healthcare services.
HeRC has three principal objectives:
- Improving the existing methods of collection, storage and analysis of linked healthcare data records and understanding more about their potential uses to improve public health and wellbeing
- Using these improved methods to conduct cutting edge research that will drive deep improvements in health services for the general public and those providing healthcare services in UK and further afield
- Increasing awareness of health informatics as a vital service within healthcare and educating healthcare professionals on our research findings
For more information please contact:
Stephen Melia
Communications and Public Engagement Officer
Tel: 0161 306 7876
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Email: stephen.melia@manchester.ac.uk
