A two-year project called Understanding Patient Data has been launched by the Wellcome Trust to support better conversations with the public about the uses of their health information.

‘Our starting point is that it’s incredibly important to be able to make better use of patient data to deliver better care, improve our health, and services across the NHS,’ explains Nicola Perrin, Wellcome Trust Head of Policy, who is leading the work.

‘We can only do that if the public, patients and healthcare professionals have confidence in how data is used and understand more about the safeguards that are in place to protect patient confidentiality. There needs to be much more transparency.’

The more information people have, the more comfortable they are with data being shared

Research by the Wellcome Trust last year found that only a third of people felt they had a good understanding of how the NHS uses patient information. People said they were generally comfortable with anonymised data from medical records being used for improving health, provided there is a public benefit, but many were uncomfortable with the idea of companies accessing their health data. They had particular concerns about information being passed on for marketing or insurance purposes.

Other studies have shown that the more information people have, the more comfortable they are with data being shared more widely.

A website called Understanding Patient Data has been launched to help healthcare professionals talk to patients about the uses of their health data. It provides 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 and how personal information is safeguarded.

It also explains why it is important to get the language right, using words that are accurate but also clear and meaningful and there are case studies explaining the wide range of ways that patient data is used to improve care.

In addition to the website, the project will be using advocates across different communities who will be able to make the case for the responsible use of data and to share examples of best practice. There are also plans to develop a series of animations explaining what happens to patient data in the NHS.

‘This project is about having a dialogue and discussion with patients, it isn’t a top-down message saying to them you must let your data be used. The aim of this work is to help people feel more comfortable about sharing their data,’ says Perrin.


Screen Shot 2017-06-27 at 09.52.07Nicola Perrin will be giving a talk at the Digital Healthcare Show, taking place at London’s ExCeL, 28th – 29th June.

Register here for your complimentary pass.