New Data Saves Lives strategy for health and social care aims to build public trust

The strategy outlines the role that health data will play in ‘major digital transformation’ of the NHS and health data research in England, and the changes needed to realise this. It sets out ambitious  reforms for the health and care sector in England to transform the way it uses data to drive breakthroughs and efficiencies. 

 

Some of the key pledges made in the plan include: 1. giving patients greater access to their GP records and more power over how their data is used, 2. ensuring researchers can only access data in secure data environments, and 3. using data to support the NHS to clear the Covid-19 backlog. 

 

Underlying the strategy is an ambition to improve trust in the health and care system’s use of data. To this end, the Government has committed to a new data pact with the public, which will be used to hold Government to account and ‘reset the conversation on health data’. This will be developed in partnership with the public, healthcare professionals and charities, and will be published before the end of 2022.

We recognise the vital role that health data already plays in heart and circulatory disease research, helping find new ways to prevent, diagnose and treat conditions that affect 7.6 million people in the UK.  

 

Today, we are supporting tens of millions of pounds of research projects that use health data, including our £10 million BHF Data Science Centre in partnership with Health Data Research UK. Launched just months before the Covid-19 pandemic struck, the BHF Data Science Centre is leading several large projects that aim to better understand the relationship between Covid-19 and cardiovascular diseases. 

 

We are committed to ensuring patients are part of the conversation in ensuring how their health data is used. Our expert patient data panel exists to share their lived experience with cardiovascular disease and help us develop expertise in understanding the complicated landscape around health data – both the challenges and the opportunities it provides. Importantly, the panel ensures that our data work is always supported by a strong patient voice, encouraging and challenging us on matters of engagement and transparency. 

Following the launch of the strategy, Kate Cheema, our Director of Health Insights said: “We welcome the Data Saves Lives strategy’s clear ambition to improve public trust in data.  

 

“As a research funder, the British Heart Foundation believes in the incredible promise that data holds for better research that will translate into improving people’s health. We also believe that it cannot be accomplished without transparency and clear accountability as the twin commitments where any patient data is shared. 

 

“As ever, implementation of the strategy will be critical to public trust – we want to see more detail on the new ‘data pact’ with the general public to help set out how the healthcare system will use patient data and what the public has the right to expect.  

 

“Alongside other charities, the BHF looks forward to working with NHS England on its delivery plan to make this strategy a reality.”