NHS @ 65: transparency is the future of the people’s NHS

You attend a hospital with your disabled daughter. You do this pretty much every day because your daughter has regular seizures and emergencies. Every time, you have to start all over again because the hospital doesn’t know who your daughter is. More paperwork.

Then you wait and wait because the staff have to find a hoist to lift your child out of her wheelchair onto a bed. Why couldn’t you have called in advance to tell them she was coming? Hours and hours of waiting.

This is the NHS in the experience of one mother I met recently: everyday indignities and inhumanities and, in her face, the real human cost is clear enough. This isn’t everywhere, or everyday or every patient. But we need a transformation in the quality of customer service in health and care: patients must be respected as people. The NHS belongs to us all.

I have twins and we get letters from the hospital inviting us to appointments after they have expired, or mixing up the boys and their conditions. Inconvenient for us – but a service that is unintelligent about its patients, carers or clients, that does not always know with accuracy who it is treating, cannot guarantee its safety.

When the NHS is 70 – we may observe that data truly is the blockbuster drug of the 21st century

It is this lack of data, insight and information that is our greatest problem – and our greatest opportunity. Transparency in health care – development of a safe, open culture of data sharing between clinicians and patients – will be the most important contribution this generation makes to the sustainability of the NHS.

It is the most important public policy innovation of our time. The viability of our health service, in an age of financial constraint and demographic challenge, depends on patients taking much more control of their own health and care – a new operating model where, through the seamless sharing of information, the NHS unleashes the power of the people it serves.

For the transformation of customer service, we need a revolution in transparency and this is why it is one of the core strategic priorities for NHS England.

The 65th year of the NHS is full of landmarks – real initiatives that will put much better data in the hands of clinicians so they can improve their outcomes and give patients new tools and new freedom to make more informed decisions and be empowered as participants in their own care and wellbeing.

Here are three innovations that are unprecedented:

• Clinical outcomes data by individual consultants will be published by ten professional associations including cardiac, vascular and orthopaedic surgeons;

• Every hospital in England will publish Friends and Family Test data – providing a new insight into the quality of customer satisfaction with local services;

• The first anonymised data that link the patient pathway between primary and secondary care for services in England will be made available. This will transform our understanding of outcomes in care.

Put together, these represent the biggest moves ever taken anywhere in the world to put transparency and patient participation at the very core of a health and care service. 

There are other steps we urgently have to take to make the data revolution real: NHS providers must quickly make the NHS Number the primary identifier on all patient records so that all data can be linked and patients identified, with accuracy.

Never again should the mother I met have to wait for hours for a hoist to arrive at the bedside of her daughter. From April 2014, this will be a contractual requirement for trusts.

That’s one key step on the road to the full implementation of safe, digital record keeping in the NHS – and it is the prize of seamless, interoperable data, accessible to the patient and the clinician in real time, that will finally guarantee high-quality outcomes and customer service for all.

Our ambition is to have reached that objective for all health and social care services in England by 2018. By then – when the NHS is 70 – we may observe that data truly is the blockbuster drug of the 21st century: the most powerful tool we have to improve our collective health and wellbeing.

Transparency is the future of the people’s NHS and the future is open.

This is an extract from Tim Kelsey’s contribution to the Nuffield Trust publication: The wisdom of the crowd: 65 views of the NHS at 65. The collection of essays was published on Thursday 4 July 2013.