When we are at our most vulnerable, health and care professionals having access to our records allows them to understand our needs and make the best decisions with us, and for us. Data, quite literally, saves lives, argues Dr Simon Eccles.
Since the NHS was created, nearly 70 years ago, this information has mostly been recorded in paper based records or locked in local IT systems.
But it isn’t 1948 anymore and we don’t need information to be restricted by organisational boundaries that slow down patient care and compromise its safety any longer. Technology has transformed how we bank and shop, enabling companies and customers alike to see what they need, when they need it across real and online environments simultaneously. It is time health and care systems and practices follow suit.
Over the past few years, we have seen a range of local shared care record initiatives established across the country, designed and delivered independently. Through these initiatives information is gathered by professions across health and care settings – hospitals, community services, GPs and care services – and brought together into a single record that reflects the care given to a patient, rather than the care given by an individual organisation.
On 23 May, NHS England announced that Greater Manchester, Wessex and One London will receive up to £7.5 million over the next two years as they become part of the Local Health and Care Record Exemplar Programme. This national programme is designed to support local areas that are already adopting best practice in the collection, protection and ethical use of health and care data to go further, faster and encourage others to follow swiftly in their footsteps. An additional two exemplars will be added to this initial cohort in the coming months.
Local Health and Care Record Exemplars will normally cover populations of three to five million people. This will enable health and care professionals to access information for patients whose care necessarily crosses organisational and geographical boundaries. As a result, patients with complex illnesses such as cancer and vascular conditions won’t have to endlessly repeat the same background information in their appointments; enabling more valuable consultations for both patients and health and care staff.
Exemplars will also help the NHS, public health and social care system to understand patterns of illness and preventative measures for those populations. This in turn will allow providers to run their services effectively and flexibly to meet the needs of local people.
If we are to bring these local populations with us, we need to earn and retain public trust that their personal and sensitive health and social care data is treated safely, securely and ethically within appropriate governance frameworks. Key to this trust is transparency and accountability at every level of the system – for the way patient data is used, protected and shared.
That is why, in line with the introduction of General Data Protection Regulation (GDPR), on 25 May NHS England launched a six week public campaign to raise awareness of how data is used to improve health and care services and the stronger protections that the law now provides. It is also right that we offer patients meaningful choice around how their data is used. That’s why patients are now also able to access a digital national data opt-out which allows them to choose whether their confidential patient information is used for research and planning. To find out more visit: www.nhs.uk/your-nhs-data-matters.
By creating a safe and secure environment for data sharing across local populations, I believe patients will trust us to look after their information, allowing us to deliver better health outcomes directly to them – and to their families, friends and to many future generations to come.