Data can be a tool for forming an equal relationship between patients and the NHS

As Simon Eccles, chief clinical information officer of NHS England stated this month, the NHS is living in the technological “dark ages” – staff must challenge the use of obsolete computer systems and demand better.

While I can easily imagine a revolt of NHS administrators merrily throwing computers off hospital roofs, (”they’re less of a help, more of a hindrance,” I’m told), we need to think on a far grander scale. It’s not just computer systems keeping us in the dark. Instead, we must challenge the very data on which all our health rests and for that we need a full-blown patient revolution.

When the Lloyd George patient record first rolled out to a small number of workers in 1911, these men had no notion of reading the luridly illegible notes of their doctors, let alone contributing their own scribbles to them.

Data dilemma

Their health information, along with that glorious power of decision-making, was firmly in doctors’ hands. To adopt Eccles’s comparison, doctors were the medieval priests from the dark ages, gatekeepers to good health, clutching our records like incomprehensible Latin bibles.

Throughout the years since, little has changed. Clinicians have long decided what data is recorded based on what they find useful. With clinicians, the conduit of this data, records do a poor job of reflecting life beyond the brief 10 minutes of patient interaction. Meanwhile, clinicians firefight, as they must with the clock ticking. What’s the diagnosis today? How do I treat it? How do I “care” for this patient?

Yes, the current NHS drive to improve the public’s access to their own records is a step out of this dark world. As a cancer survivor, I’m looking forward to the day I can access my scan results digitally within days, not wait the hellish two months for a consultant’s letter.

But improving access is just one small tiptoe into the light. It’s not going to revolutionise healthcare.

An unequivocal system change

What’s needed is a total paradigm shift: reforming personal health information so data is guided by outcomes important to patients. We need to make the NHS aware that life goes on outside its walls. Improving this life must become data’s prime agenda.

Currently, data is ostensibly driven by the all-encompassing theme of “good care” – perfectly acceptable if you’re dying. During my own resus encounter, with vision blurring, I recall doctors and nurses rushing to administer blood and liquids – recording, checking and generally doing a grand job of keeping me alive. Data seemed to work.

Yet when people try to live, and live well, “good care” shouldn’t be the aim – the NHS needs to strive higher.

Remembering my cancer treatment and the long years of recovery afterwards, life came to a depressing halt. Thinking… feeling… living in the fearless way I once did… there was none of that. My entire being was focused on placing one foot in front of the other, desperately trying to move forward, while battling a health system that pushed me back.

What’s needed is a total paradigm shift: reforming personal health information so data is guided by outcomes important to patients

Simply put, “care” was driven by the wrong kind of data. It ensured clinicians were checking I was alive every six months, my bloods were recorded, and I had time to vent life frustrations at my poor beleaguered nurse, to be summarised in a GP letter.

But beyond that, data wasn’t useful to recovery and wasn’t helpful to me at all. Where was the focus on going back to work, getting active, living to my full potential?

And what of the unvoiced questions that lurked in the deepest parts of my mind – how was data helping those?

Where do I turn at 3am when the anxiety spiral hits? How do I know my doctor will believe me if I become seriously ill again? Am I supposed to feel this scared? How do I get better? Who is responsible for my health now? Do I have the right to see my consultant? Do I really have to wait two months for my scan results?

Care is what clinicians do

The issues borne of raw human vulnerability are just as important to resolve as those borne of clinical necessity. While the hard data keeps us alive, we need “soft data” serving us as patients, and as humans.

This soft data must be patient-generated, addressing themes currently neglected in the health world. Themes like empowerment and patient voice; facilitating easier, quicker access and diagnosis; ensuring informed choice of treatments; building strong relationships, and reducing the anxiety and burden of navigating the system.

This refocuses on outcomes important to patients, advancing an agenda of living, not of caring nor simply surviving. It’s geared towards the person’s rights and responsibilities, not the clinician’s responsibilities of care.

Soft data must be patient-generated, addressing themes currently neglected in the health world

Care just isn’t a patient outcome (and coining it “person-centred care” isn’t going to win innovation awards.) Care is what clinicians do. For health to improve, the NHS and its data needs to be far more interested in what people are up to.

And crucially, with the NHS founded on utilitarian principles – withholding treatment to some while still doing the best for all – the system needs clear person-centred outcomes to evaluate. It must rest on data that firmly establishes the ultimate health and happiness of individuals, not the efficiency of the system. It’s so important to get this data right.

So where to begin with all this? How do we include soft data and how do we make it useful to health and wellbeing?

 A three-step journey

For a start, data must focus on what makes us all unique. In my role as a Patient Leader with the PRSB (a collaborative body working with NHSE and NHSX to establish high standards of records), I worked on the Longitudal Health Core Record project. The aim of this work was to decide the essential patient information that’ll be shared between people and organisations.

Consulting the public, the PRSB found a huge appetite from people who want to contribute to their own health record. So now, part of the LHCR core record is an “About Me” section. Currently, it’s an empty bucket without structure, lacking the century of work that’s established the rest of the patient record.

But hopefully, with further investment, people will finally be able to share what’s important: their goals and health ambitions and the support they need to achieve them. Think of the seismic culture change this would cause…

With all this in mind, digital leaders have a three-step journey ahead of them. First, empower us all with full access to our health information. Second, give people a chance: allow them to contribute to Soft Data, focusing on their own hopes and dreams. And finally, ensure all data serves people, as well as clinicians and the system. For every policy, strategy, and data decision, a patient champion must be there asking, ”but what about me?”

I hope one day data will no more form a static and esoteric report but become a tool for a true equal relationship between people and institutions. And then, we can all live the dream: leading a full and fearless life. Just imagine this grand leap, out of dark times, and into the light…