Centring care on patients, not process or place
Jon Reed, Chief Digital Officer at healthtech consultancy Future Perfect Healthcare has made instigating change in the NHS his life’s work – but it’s his own personal experiences that spur him on to break down the institutional siloes and infrastructure barriers which still persist.
My career in healthcare IT has been long and varied. I’ve had to opportunity to see the very best of our NHS in action, working with organisations up and down the country to help digitise their operations. My mother first inspired me to choose this path; she suffered with type 1 diabetes and was under the head of pathology at the local hospital when he asked if she knew anyone who could do some programming. I used to write games on my home computer and she suggested I could help. I quickly found myself working on interesting projects which made a real difference to patients – and I was hooked.
My mother is still a large part of what motivates me today, but for different reasons. Sadly, she suffered 40 years of chronic illness at the hands of her diabetes and later breast cancer, and lived a life in and out of hospital several times a year before she passed away six years ago. For me, it was this first-hand experience of navigating the NHS, health and social care systems on behalf of a loved one which really brought home the problem of care which is devised around processes or places, rather than the patients themselves.
In times of Covid, it is clearer than ever that we need to do better. There has been great innovation in informatics, but we’re not where we should be. It seems obvious that it should all start with the patient, but it’s simply not the way things are set up to work. Despite progress being made it is slow, and there are still many barriers to overcome – but nonetheless, I believe it is crucial that we strive to find a way to centre care on patients, not process or place. So, where do we start?
Structure and standards for the NHS
Part of the problem lies in the structure. Trusts are set up as sovereign organisations and as such their focus is within those boundaries. While a lot of progress has been made towards joining up health and care, it is still a challenge to put the care delivery process for each patient at the heart of that while these legacy structures exist.
What’s also missing is mandatory standards when it comes to interoperability, built into supplier contracts. Progress has been made in the GP space but more needs to be done in acute, mental and community settings. NHSD and NHSX are working on this and the FHIR standard work is a start. We need to go much further than getting single organisation, legacy solutions to simply share information between each other. My vision is for a post-modern EHR where everything from this point onwards is grounded in proper data standards.
Clearly it isn’t possible to knock the house down and start again. Instead, we have to find a way to change the wheels while driving the car. With strong leadership, perhaps we build something new incrementally in parallel and then move to it. How?
Freeing the patient data
Matthew Gould talked at length recently about how the NHS needs to focus on being a data driven organisation. I couldn’t agree more, but really this is old news. We need systems that are truly open, with no boundaries and a holistic mindset that enables the kind of data liquidity where information can be shared across apps, organisations and boundaries, making a patient-centred approach viable. Hospitals go out to tender and seem willing to spend millions with US vendors on whole healthcare systems which are wasted on individual hospitals. There is little acknowledgement of the fact that care isn’t delivered by a single organisation. If the value of clinical systems could be unlocked to support the whole, data-driven, patient pathway across organisational boundaries – wouldn’t that be an aspiration worth investing those millions in?
Of course, concerns about information governance remain a barrier, and also a paradox. When the NHS asked people if they wanted their data shared, many already thought it was and were shocked that in fact that’s still not possible. Often, if their reaction is negative, it is about how the idea was framed to them. When there is an understanding that the data can only be accessed where there is a legitimate reason to do so, people know that this will ultimately lead to them receiving more appropriate care and a better outcome.
Together for digital change
When it comes to the delivery of care, IT teams shouldn’t be driving the change – clinicians should – but it can be hard for them to know how the technology could transform their work. It’s exciting to see more and more hybrid clinicians and technologists across the NHS who combine both skillsets to re-imagine how we deliver health and care with patients at the centre, and programmes in place to nurture and support that.
There are great strides being made already in the devolved nations. Wales and Scotland have really got behind a holistic approach. Plymouth NHS Trust has been implementing a data-driven transformation and a gradual migration to the cloud. Somerset NHS Foundation Trust has put in place e-prescribing processes. And Leeds and York are making great strides with electronic patient records. What is clear to me, through both my personal and professional experiences, is that by working together, bringing systems together and the data together – we can put the focus back on the patient. After all, giving them the best possible care is what it is all about.