Transformation Directorate

Data strategy to support delivery of patient centered care

  • Patients to have better access and greater control over their health and care data under new proposals
  • Records will be shared between systems to allow faster, more specialised treatment
  • Plan will help power vital research to discover new treatments and insights to save lives

The way data is used across health and care sectors is set to be transformed, giving patients control of their health data and enabling staff to save more lives through improved care and treatment.

The draft strategy ‘Data Saves Lives: Reshaping health and social care with data’ published today by NHSX builds on the ground-breaking use of data during the pandemic with privacy and security of data at its core.

Under the proposals, patients will easily be able to access their test results, medication lists, procedures and care plans from across all parts of the health system through patient apps, such as the NHS App, by ensuring data is shared safely and more effectively across the system. By improving their access to data, people will also be able to manage appointments, refill medications and speak with health and care staff when needed.

The strategy aims to break down data barriers and give patients confidence that health and care staff have up-to-date medical information, regardless of the care setting, enabling clinicians to make quicker, more informed decisions to deliver better treatment. Improving data collection and the way NHS systems work together will mean staff spend less time collecting and looking for information they need, so they can spend more time with those they are caring for to focus on looking after them.

Health and Social Care Secretary Matt Hancock, said:

“Data saves lives. More effective use of data will deliver better patient focused care. It will  free up staff time to focus on patients and  allow clinicians to make better, more informed decisions on treatment and support.

“The pandemic has taught us we must be bold and the great strides we have made on vaccines and treatments during this time have been made possible by the way we use data.

“This strategy seeks to put people in control of their own data, while supporting the NHS in creating a modernised system fit for the 21st century which puts patients and staff in pole position."

So that health and care staff can access the right information when they need it, the strategy proposes a new duty to share anonymous data safely and appropriately across the entire health system. New legislation will also be introduced to require all adult social care providers to provide information about all the services they fund to ensure service users have the best care and experience. This could transform the care of the most vulnerable by ensuring staff have the information they need as soon as they need it, helping to provide the best possible care to the elderly.

In addition, the strategy proposes better use of personal data to analyse key trends in the health of the nation. This could improve the commissioning and planning of services for local communities and allow better preparation to identify, prepare for and respond to future diseases.

The NHS is committed to using data lawfully, with respect, and holding it securely with the right safeguards in place. These protections reflect the strict parameters for the use of data and security standards set out by the National Data Guardian for Health and Care. Today’s new strategy commits the NHS to going even further with a commitment to publish the first transparency statement setting out how health and care data has been used across the sector by 2022.

Minister for Innovation, Lord Bethell said:

“The safety of the public will only be improved if the health and care system makes better use of data.

“We have already seen how analysing patient data on maternity outcomes has improved care for mothers and babies. Greater sharing of patient information across the health and care system will undoubtedly go on to drive further improvements in patient safety, ultimately saving lives.”

The draft strategy proposes:

  • putting patients at the heart of their health and care data, with easy access to their own healthcare records;
  • giving health and care staff easier access to the right information to provide the best possible care through shared records and simplified information governance;
  • enabling the proportionate sharing of data for the purpose of supporting the health and care system;
  • giving adult social care high quality, timely and transparent data so they can make individualised choices to personalise care;
  • modernising data architecture and infrastructure underpinning the health and care system to improve standards, protect data and stay ahead of cyber risk;
  • supporting innovation for the benefit of patients and staff such as empowering patients to test and monitor changes in their vision remotely using an app, and using AI to assess data from care home worker’s reports to predict the likelihood of falls and hospital admissions of patients, enabling appropriate safeguards to be put in place; and
  • building on improvements to speed up access to data during the pandemic, where there is clear benefit for the system as a whole.

The plans have been published in draft ahead of engagement with the sector and the public over the summer.

Patient data has already been vital in enabling quicker, more informed clinical decisions on COVID-19 treatment, saving more lives. Accelerated access to real time data was used to direct resources, such as PPE and ventilators to hospitals and it fuelled life saving research into drugs such as dexamethasone which is estimated to have saved over one million lives.

Matthew Gould, NHSX chief executive, said:

“Throughout the pandemic we saw examples of data improving care and saving lives - from the speed of vaccine development to the discovery of treatments for COVID-19. If we want to continue improving care, we need to transform how we use data.

“Patients need to own their data, have access to their data, and have confidence on how the NHS is handling it on their behalf.

“This strategy takes this agenda firmly forward, and is good news for patients, staff, citizens and anyone who cares about the future of the NHS.”

NHS medical director Professor Stephen Powis, said:

“For more than a year, NHS staff have been at the forefront of innovations, based on research and development with patients, to help the country deal with the biggest threat in a century, whether it be trialling new treatments like Dexamethasone that has saved a million lives around the world from Covid-19, or delivering the biggest and fastest vaccination programme in health service history, and this latest initiative will ensure that many more life-saving treatments can be developed for patients by the NHS thanks to better access to data.”

Sir Patrick Vallance, Government Chief Scientific Adviser, said: 

“The value of timely and comprehensive healthcare data has been brought to light throughout the pandemic. Data handling by the NHS has been instrumental in our response, from monitoring the virus to supporting the vaccine rollout. This refreshed strategy builds on this ground-breaking use of data and protecting privacy, and will ensure that it remains an asset for future research and improvements in healthcare.”

Charlotte Augst, Chief Executive of National Voices, said:

“The NHSX data strategy addresses many of the issues we need to get right in order to build a health and care system that knows what matters to people and communities and therefore can respond to those needs and priorities.

“Refreshingly, it focuses on the work of health and care professionals in the care they provide, rather than on structures, tech or overblown transformation initiatives. It’s unpacking of concentric circles around the patient, the team, the system and the wider research and innovation landscape is a good way of conceptualising what will be gained from better data use, whilst staying focused on what matters most: a better experience of care, including better access and outcomes.”

Professor Martin Green OBE, Chief Executive, Care England, said: 

“The role of data in social care is evolving at a very fast rate. Over the course of the COVID-19 pandemic, it has become increasingly apparent that reliable data from social care is a necessity to analyse the health and quality of life of the nation.

“The sector is starting to produce data at levels previously unimagined, and data is key to driving decisions which will help improve the quality of life of the people that we care for and support.”

Dr Clare Gerarda, a GP and former chair of RCGP said:

"Better use of data in health and care will be transformational to our NHS, to research, and is vital in our fight to reduce health inequalities and address unnecessary variations in care. 

"As a GP, data has long been invaluable in helping us to have complex conversations with patients - from explaining about individual risk of disease or to debunking the myth about a link between MMR and autism.

"Thanks to increased use of data and digital technologies, the NHS and general practice will come out of the pandemic better equipped to deliver more responsive services to patients, and this strategy will only help strengthen the care we can provide to the public."

Professor Sir John Bell, Regius Professor of Medicine at the University of Oxford Medical Sciences Division, said:

“Like most scientists, I believe use of data has been critical to advances in patient care and has the potential to enable new breakthroughs whilst the opportunity for data-driven technologies to improve our health is already with us. “Managing healthcare data carefully and sensitively is crucial, and this new strategy is a major step forwards putting the citizen in control of their information whilst setting a clear direction to enable scientists and the NHS to use data better to look after patients now and discover the treatments of tomorrow.”

Public engagement, to be held in 2021, will be used to inform how people would like to use and access their data. It will include working with the National Data Guardian, patient groups and system leaders.

Notes

The draft data strategy can be found here.

  • Since Autumn 2020 NHSX have run workshops and roundtables with representatives from across the health and social care system.
  • We are publishing the strategy in draft so the public can comment and offer views before we publish a final version. The public will be able to engage through a range of channels including a survey and/or by attending events. Up to date opportunities will be published on the NHSX website. This survey will close at 5pm on Thursday 22 July.

ENDS

Case studies and testimonials to support the draft data strategy can be found on the NHSX website.