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Transparency can save lives – Tim Kelsey

Tim Kelsey, NHS England’s National Director for Patients and Information, tells the EHealthInsider Live conference why transparency is the key to sustainable high quality services:

Sir Bruce Keogh is a hero of our time. He chose to be a heart surgeon when, in his words, heart surgery ‘was regarded as hugely controversial, immoral, against nature’; now, of course, it is mainstream. A decade ago, he chose to challenge a different orthodoxy and became champion of transparency – campaigning for the publication of comparative data on surgical outcomes.  In the years since British heart surgeons first published their data, their results have dramatically improved: survival rates for many procedures have increased by a third; 1,000 patients live each year when they might previously have died.

Transparency saves lives and it is a basic human right yet transparency, unlike heart surgery, is not mainstream in our health and care services. Last year, I took a vision to the EHI Live conference (held this week in Birmingham)  to make transparency the operating principle of the new NHS. Data sharing between professionals, patients and citizens is the precondition for a modern, sustainable public service: how can we put patient outcomes at the heart of healthcare, if we cannot measure them? How can we help clinicians maximise the effectiveness of their resources, if they do not know where they are spent? How can we ensure the NHS remains at the cutting edge of statistical and medical science if we do not allow researchers and entrepreneurs safe access to clinical data?

Above all, how can we support patients to take more control of their own care if we do not give them access to their own data? Transparency, I have always argued, is key to public and patient participation and is the means by which we create high quality, sustainable health services.

Events of the last twelve months have only emphasised why the data revolution is so urgent. We forecast a £30bn funding gap over the next few years in the NHS – a key response must be to do what every other large consumer industry has done and extract human and economic value from technology. Technology is of no value in its own right but it has the capacity to unleash the power of people: to liberate data and give customers the ability to do more for themselves so that services are delivered better, faster and at lower cost. That’s the lesson from banking and from airlines – far from ideal analogies with healthcare – but indicators of the possibilities. In the UK today, more than 22m adults only do online banking: technology has spurred us caution Britons to a social revolution.

This is the call to action in the NHS. We are the pioneers of a knowledge revolution – a data-led transformation in outcomes for patients. Clinicians, patients, managers, entrepreneurs –  the public at large – all who care about the survival of the NHS must now join Sir Bruce in becoming champions of transparency.

It seems to me that NHS England and our colleagues across the national health and care service are making five core offers to support the knowledge revolution.  First is to transform the availability and quality of clinical data. Care.data has been set up in partnership with the Health and Social Information Centre as a programme to deliver new resources to clinicians and commissioners, as well as patients and researchers that will mean people can start to understand the quality of patient outcomes across the pathway of care.

The first step is to link GP and hospital data – for the first time – and this, I’m delighted to confirm, starts in June next year. The next step is to enrich the hospital data. We have recently finished a consultation on how we should develop requirements on providers to enable proper accounting for their outcomes. There are some outstanding examples of the future: hospitals, like University Hospitals Birmingham, which have gripped the digital opportunity and now have data flowing in real time improving the safety and quality of every clinical encounter. But most don’t. Only 12%, for example, have digital e-prescribing systems. Our consultation confirms how urgently colleagues in hospitals around the country feel about the need to make this happen – and how challenging are the cultural implications.

The second offer is to support health and care providers to make rapid progress on being able to share their data, safely, and in real time. There is no reason why ambulances should not have access to GP records and be able to upload them as they travel to the patient emergency. Since NHS England was launched in April, the government has announced two major new funds to promote deployment of integrated digital records. Very shortly, we will be announcing winning bids for the first £260m fund – I can reveal that more than 100 Trusts will be among them. An astonishing response from organisations that are committed at the highest level to doing the right thing for their patients. The second fund will be launched to bids before the end of this year. We will be publishing an audit of digital maturity twice a year for each Trust – an index not just of progress on digital record keeping and compliance with the core standard that the NHS number must be adopted as primary identifier in all care contexts but also of how they are minimising the bureaucratic paper form filling burden on frontline staff.

Third, the offer is to transform patient and public insight resources for local health and care communities. The Friends and family test (FFT) was launched in April – an unprecedented initiative to capture data on customer satisfaction. Since then more than 1m comments have been logged – a resource of real richness to help clinicians on the ward make real time improvements in the quality of services. FFT has been rolled out to maternity services and will be launched across all NHS services by March 2015. Other complementary initiatives have also been launched: CareConnect, for example is a service which allows people to feedback on local services by phone, or text, or email, and is currently being tested in 17 Trusts in London and 3 in the north east.

Fourth, we are committed to a radical programme of empowering real control for patients and the public, where they wish it. One key commitment is to enable every citizen to have online access to a variety of GP services, including booking appointments, ordering prescriptions and their medical records. Our working relationship with clinical leaders in primary care has been a source of real strength as we collectively embrace the future on many fronts. Working closely with the BMA and the RCGP, among others, we will be ensuring that every citizen has access to a useful and understandable medical record as planned. Detailed guidance for GPs will be published by next April.

Fifth, success for all of us depends on making transparency a social movement in health and care. NHS Choices, a global success story, will over the next few months re-launch its offer to patients and the public and maximise their access to data so that everybody – with minimum accreditation – can post their apps, products and service on what is already the largest health and wellness conversation in the world. Around 1m unique users every day visit Choices – most of them British.

Sir Tim Berners-Lee, inventor of the Internet, once said: ‘One of the reasons the Web worked was because people re-used each other’s content in ways never imagined by those who created it.’ The same will be true of Transparency in healthcare. We have an extraordinary opportunity – and a great responsibility to act. The future is open and it is time for us to make it happen.

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