To be able to start an evolution is quite an exciting prospect. In my last role (Clinical Research in the NHS) we knew we had to move to an environment where data was considered to be open due to policy, legislation and for the transparency that the industry wanted to achieve. Here in Ireland there is a move from a legislative point of view to open data however the value of a truly open data environment is only just beginning to really catch on.
I still hold with the fact that open data benefits patients, if a patient wants to be able to get at their own information they absolutely should be able to. Getting there is fraught with risk to any delivery project though. Access controls are not easy to implement, data ‘ownership’ needs to be resolved and the method of access needs to be considered. However all of these elements that we must find a solution to in Ireland if we are to move to a situation where we can share digital clinical records!
The value of open data to the patient though in a world where the internet of things is becoming a permanent feature and the wearable healthcare device more and more prevalent is significant. We are trying to imagine a world where the patient is able to apply their own self recorded information to their record so why would we not consider that the patient should be able to take the information the health service has about them and apply this to their own health and wellbeing tools.
A colleague came to see me recently about a new projects and we got on to the subject of wearables, her partner had been given a Fitbit for his 45th birthday, he had started running and competing with a couple of his colleagues, the gamification of health and wellbeing in true action. However she was quite worried as this chap had gone from a standing start to running 5k plus 4 times a week, no health checks just a competition with his colleagues. If we had open data for this chap could he apply his clinical information to his Fitbit type record and get some analytics based advice on how much he should run, how quick and how frequently rather than simply turning his health into a competition that could have dire consequences.
Open data that is aggregate information, that doesn’t identify the patient, but can be used to analyse the health delivery of a country is also of huge potential. Two areas spring to mind, the ability to support new innovations in the analytical space where the delivery function has information is a rich vein that Ireland ought to be able to tap into in the same way as the NHS has done. By providing information in an open and transparent manner new fast thinking and bright organisations will be able to do way more with the data than the large health care providers can, and this will add to the delivery capability of health and improve the Intellectual Property of the nation, truly health and wealth.
The other area we are looking into is anonymised patient experience data. Not just social media although symptom analysis of Twitter for some hospitals is really beginning to deliver benefits. More simply a tool known as ‘Happy or Not’ is being piloted in the Irish healthcare system. It is a simple solution in that a patient can tap the happy or unhappy face on a unit in prominent parts of a major hospital. This data can then openly be made available to the public and the healthcare system to enable the diagnosis of difficult times in hospital or to allow decisions about where to go for care, this kind of transparency and openness is a big business change but the benefits to the patient are starting to outweigh the difficulty in getting there.
The data for mapping where power lines are in Ireland is open data, a data set that we have taken and applied to one of the modules within the Health Atlas, why? Well if we are flying doctors into a RTA or a remote area to assist with a heart attack then this data becomes essential. Flying doctors with maps adds to efficiency and safety and is largely based on open data sources.
As the patient becomes less suspicious of digital health platforms we envisage the openness of health data to grow and grow. Take the Babylon health solution and the change in acceptance of where the patient data is. Patients in Ireland can now pay a small fee and have a ‘FaceTime’ consultation with a clinician at a time that is convenient to them, in a space that doesn’t fill up an A&E that is at capacity and with an outcome that is right for the patient.
This kind of attitude change can only enhance our journey to being able to use data in an open and responsible way for the good of health delivery and the safety of patients.