Trust and Truth – New Report on Using NHS Data

06 March 2020

New research out this week by Understanding Patient Data, an organisation that aims to make patient data more visible and trustworthy, reveals what the public thinks about businesses and organisations using data held by the NHS.   

The findings show that the public will only support organisations such as private companies using NHS-held health data when there is benefit to patients across the UK, not just short-term financial gain for the NHS. Benefits to patients could include things like improving diagnosis rates or developing new medicines and treatments.  

While people recognise the potential benefits of health data being used by researchers, charities and industry, they have concerns about accountability and the potential exploitation of the NHS by private companies. The majority (74%) want the public to be involved in decisions on how health data is used, and 82% want the NHS to publish information on who it is sharing data with.  

Making sure we get this balance right is central to Crohn’s & Colitis UK’s role in a new project using patient health data in a new way. The project, called Gut Reaction, will help us better understand Crohn’s and Colitis, leading to better treatments, faster. It will make large sets of data from the NHS accessible to researchers in at a scale never achieved before for patients with Crohn’s and Colitis. Importantly, access is only allowed to researchers who meet clear principles including showing the public benefit of their work. It is safe, secure and approved by a panel of experts, including patients.  

We’ve always known how important patient and public involvement is to the design and decision making in research -something the charity has driven in Crohn’s and Colitis research. Now we have evidence about the key concerns of the public on who should get to use patient data and under what terms. Demonstrating patients will benefit from the research and the NHS will not be exploited is critical which is exactly what we are doing as part of Gut Reaction. We think we can get the conditions right to encourage more people to take part in research, share their health records and ultimately work towards a cure for Crohn’s and Colitis.

Sarah Sleet
CEO at Crohn’s & Colitis UK

We’ve always known how important patient and public involvement is to the design and decision making in research -something the charity has driven in Crohn’s and Colitis research. Now we have evidence about the key concerns of the public on who should get to use patient data and under what terms. Demonstrating patients will benefit from the research and the NHS will not be exploited is critical which is exactly what we are doing as part of Gut Reaction. We think we can get the conditions right to encourage more people to take part in research, share their health records and ultimately work towards a cure for Crohn’s and Colitis.

Dr. Natalie Banner, who leads Understanding Patient Data said: “This research shows that people are excited by the idea that NHS-held data could be used to improve care for patients, and help everyone live longer, healthier lives. At the same time, this data is about people, so the public should have a say in how it’s used. The Government must act now or risk damaging the trust people have in the NHS.”  

To take part in Gut Reaction, sign up to the NIHR BioResource and keep an eye on our website for further updates. 

You can view the full Understanding Patient Data report here.