The Head of Architecture and Cyber Security at NHS England outlines the Local Health and Care Record initiative and its aims:

Some time ago, I met the lead oncologist, Geoff, at Leeds Teaching Hospitals about the work they were doing on bringing together care records – work that would make a big difference to patients, but that had a long way to go.

Little did I know that a week later I would need these services when my mum got diagnosed with cancer.

Finding out she had cancer was hard enough, but as a Sikh this was a double whammy as she’d likely lose her hair and have to deal with the cultural reaction of the community at the same time.

Geoff was fantastic; he completely empathised with our concerns. We could go for strong treatment but then lose mum’s hair, or sign up for a clinical trial, which could mean that she would be treated but not suffer the wider consequences. Being sensitive to our wider cultural needs meant a lot. Mum signed herself up.

Thanks to the early intervention and incredible treatment, mum is now clear and having regular checks, but we still have the folders of paper and the memories of trying to piece together every test, clinic and appointment; continually going over the same information with each clinician just to make sure they had all the previous context. It was laborious – but we weren’t going to take any risks.

We also wanted to be in control of exactly who would know about her situation and the treatment she was going through. It was going to be hard enough for mum, without the additional pressure and stigma of wider society – we’d seen how this has ended up with people hiding away and impacting their mental state and never recovering.

I’m sure that each of us has a story of loved ones and the continually arduous role we have had to play in putting pieces of information together – that are literally pieces of paper – across complex pathways of care, in a subject area that is full of Latin terms. The sharing of information is no longer a ‘nice-to-have’, it’s critical. But it’s a sensitive subject, and we must treat it accordingly. I wanted it to be treated as sensitively as her care.

But, in addition to simply accessing information, we need this so we can form actionable insight using data from longitudinal care records, like mum’s: Being able to see trends in the outcomes of care, identifying gaps in care so we can intervene early, using algorithms to inform decision-making and being able to compare interventions.

Meanwhile at work, I’d been working alongside others to work out how we can crack this impenetrable nut. We’d seen the missteps of previous national initiatives – the main lesson being that this is a cultural not a technical challenge; one where we have to cultivate the approach and not pretend that there is a silver bullet that can solve this.

The work in local areas helped lead the way in successfully addressing the needs of their patients and care professionals by bringing together information from across venues of care – e.g. social workers being able to access hospital records so they can plan the discharge; GPs seeing the virtual ward view of their patients in hospital; community nurses being able to proactively intervene by being notified of gaps in care of their diabetic patients; and being able to identify high-risk cohorts of patients when linking health data and wider determinants of health.

We have also learnt several important lessons from their experiences. Firstly, that delivery needs be led locally, as local health and care professionals are the closest to understanding the local user needs to enable delivery. Secondly, that this must be based on building and, more importantly, maintaining trust with public and professionals. And finally, we must embed common standards, information governance rules and interoperability into this upfront.

But to succeed, this cannot be an isolated technology project. Instead it needs to be immediately useful to care professionals and be part of the local service transformation. This is what the local health and care records are about: They’re locally led, based on trust with the public and professionals, being transparent with citizens about how their data is used, and focused on joining up health and care data through the creation of a longitudinal care record. This is underpinned by ensuring they use common standards, common national components, and work seamlessly together.

Knowing that this will also positively benefit me and my family makes this even more a personal reality. I especially look forward to my twins being a test case for when clinicians need to patient-match  their records; they have the same first initial, gender, date of birth and with a different surname to me and my wife – it was as if the Sikh naming convention was designed for this!