Understanding Patient Data launches today

In July last year, in response to the Caldicott recommendations, we announced that we were setting up an independent patient data taskforce. Nicola Perrin, who leads the initiative, explains more.

Illustration of a hospital patient and health carer.
Understanding Patient Data has resources to explain how and why patient data is used to help people make informed decisions.
Credit: iStock

What is Understanding Patient Data? 

Research by Wellcome 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, Data security, consent and opt-outs, called for "a fuller conversation about how data is used in the NHS".  

Understanding Patient Data has been set up to help achieve this. We want to support 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.

What has Understanding Patient Data been doing so far?

Our website, which is launching today, includes a first set of resources to provide information about how and why patient data is used, and how data is protected. 

By talking clearly and openly about the benefits and risks, we want to help people make informed decisions when they have options about how their data might be used.

We want to explain why it’s so important to use patient data to improve health and care. We’ve been building up a comprehensive, and searchable, bank of case studies to demonstrate these wide range of different uses. Examples include evaluating the safety of vaccinating pregnant women against whooping cough, and understanding why diabetes rates vary between ethnic groups.

It’s such a complex issue. How can you explain the use of data? 

The language used to describe the uses of patient data is complex and confusing.  At the moment, many different words are used to describe the same thing, and many of those words are unnecessarily technical.  Words like ‘pseudonymised’, ‘key-coded’ and ‘de-identified for limited disclosure’ do not help to build public confidence.

We think that an important part of improving conversations about patient data is getting the language right, using words that are accurate but also clear and meaningful. 

We’ve been looking at the words used to talk about the use of data for care, treatment and research, and to describe different levels of identifiability. It’s really important that people understand what is meant by ‘anonymised’, to help people understand whether they could be identified when data about them is used. 

We’ve come up with some simple ways of explaining the concepts. We hope that these words and images will be used as widely as possible to explain technical concepts in a meaningful way.

What do people think about using patient data for research? 

A number of studies have explored how people feel about the use of patient data, and they’ve had  fairly consistent findings: 

  • people are generally comfortable with anonymised data from medical records being used for improving health, provided there is a public benefit 
  • many are uncomfortable with the idea of companies accessing their health data, with particular concerns about information being passed on for marketing or insurance purposes. 

Studies also show that the more information people have, the more comfortable they are with wider uses of data. 

That’s why we want to develop advocates across different communities who can make the case for the responsible use of data. Healthcare professionals are particularly important. The 2016 Ipsos MORI Veracity Index confirmed that doctors and nurses are the most trusted profession in Britain. Healthcare professionals will be the best people to explain the benefits of using data to their patients.  

Digital technology is such a fast-moving field. What are the implications of new uses of data?

New digital and data-driven technologies in healthcare, such as greater use of tele-monitoring or an increasing reliance on machine-learning and artificial intelligence, will have significant implications for public confidence.  

We want to find out more about public attitudes now, so that we can develop appropriate governance frameworks to ensure new technologies are introduced in a responsible way.

Who is supporting Understanding Patient Data?

The website has been set up and hosted by Wellcome, with funding and support from the Medical Research Council (MRC), Department of Health, Public Health England, and the Economic and Social Research Council (ESRC).  

Importantly, we operate independently of any of our funders. We’re also working across the sector with support from medical charities and patient groups, the NHS and clinicians.

More information