Published on: 11th April 2017
Research by Wellcome Trust last year found that only a third of people felt they had a good understanding of how the NHS uses patient information. The National Data Guardian’s report called for “a fuller conversation about how data is used in the NHS”. Understanding Patient Data has been set up to help achieve this by supporting better conversations about the uses of health information, and provide objective evidence about:
• How and why data can be used for care and research
• What’s allowed and what’s not allowed
• What options patients have
• How personal information is safeguarded
Everyone should be able to find out how patient data is used, by who and why, how data is kept safe, who makes the decisions and what your choices are. www.understandingpatientdata.org.uk, beginning with ‘what you need to know’, provides objective information that can be used by anyone to help explain the basics. There is also a searchable set of case studies, giving examples of the wide range of different ways that using data can be used to improve our health. These range from evaluating the safety of vaccinating pregnant women against whooping cough, to understanding why diabetes rates vary between ethnic groups.
The website is aimed at anyone who is having conversations with the public about the use of patient data – whether that be charities, the NHS, healthcare professionals, policy makers or journalists. Understanding Patient Data want to help share best practice, and will be highlighting the latest ideas and research to help support better discussions.
The site is still in development, and further resources and functionality will be added over the next weeks and months. Contact Understanding Patient Data to let them know what you think: firstname.lastname@example.org
Understanding Patient Data’s website was launched on 6 April 2017, visit www.understandingpatientdata.org.uk
Source: Understanding Patient Data