Sunday 8:30 in the Emergency Department: a young man has been admitted with a syncopal event, possibly a seizure. It turns out that he studies in the South of England. Has had similar events there and had a number of tests including comprehensive imaging. He does not know the results, and in fact when he went for a clinic appointment there, the doctor who saw him did also not know the results (but promised to find out).
The patient’s family lives locally. That means an hour and a half down the North Wales coast. There is no way to bring him, the family, the reports and myself quickly together the next day to discuss ways forward.
It is 2017. 27 years after the conception of the world wide web. I can choose to see my bank statement, my electricity bill, my telephone records on-line. I can book a date for a gas meter reading. I have a choice. It helps me to match resources of those supporting me and my preferences. Choice is a key word in modern services but the choice of who holds information about health holds back better care.
As a patient I still can’t see life saving information about myself on-line in most settings. And certainly not after the doors of the hospitals have closed behind me. I have no choice.
The Royal College of Physicians has over the few years extensively investigated the usage of patient held records. Since 2013 the RCP has promoted patient access (https://www.rcplondon.ac.uk/news/patient-access-health-records-isn-t-it-about-time) and issued a number of reports, most recently a report led by the experience of patients.(https://www.rcplondon.ac.uk/news/rcp-launches-patient-led-report-insights-use-personal-health-records). With this patient access has entered mainstream and the arena of evidence based medicine, something that can be examined and scrutinised, developed and researched. The RCP has equally pushed to get communication from hospitals not just directed towards General Practitioners but also addressed to the person most affected (https://www.rcplondon.ac.uk/news/writing-letters-patients-what-s-big-deal).
Outside of the walls of the hospital we seem to be thus on the right track. We are starting to have a choice.
Fast forward ten days: an evening with the Bevan Commission in North Wales: ‘What Should the Future Model of Health and Care Look Like in Wales?’
In a circle of enthusiastic and engaged participants from health, councils, social care, third sector organisations we are discussing perspectives for the next generation of health care services. Are more disruptive ideas needed? How do we need to change who we train, what we train and how we train? What is the impact of having large rural areas vs providing traditional care in cities? What should be the priority to develop care in the Principality?
Co-design is high on the agenda: with health care professionals and patients. We have known this for years yet frameworks have often not left the paper they were written on to become practice. We know that models of preventative medicine might need to be pushed: better social contacts, housing, etc. But how do we get buy in from all players: nurses, doctors, patients, carers, allied health care professionals etc etc.
Traditional hierarchies and fear of change will make these challenging unless we manage to change the way we are using the levers of power: control of finances and control of information. Patient held, controlled and generated records would be uniquely placed to promote this form of change.
The pioneers are out in force tonight: a colleague reports from a Manchester start-up that is building an application that allows patients to describe their frailty. Crucial for communication with health and social care teams. Crucial to compare the patient who enters an encounter in healthcare with their ‘normal self’.
Another Bevan Technology Exemplar is developing a digital maternal record. Interesting that in the most risky business in medicine records are already patient held. A good choice!
What is holding us back to use existing technology that is already used in many other areas in our own area of practice? Managers? Politicians? Clinicians?
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