The finding followed on the heels of a government-commissioned independent review, ‘Data security, consent and opt-outs,’ which called for, “a fuller conversation about how data is used in the NHS.”
Understanding Patient Data has been set up by Wellcome to help achieve this. “We want to support better conversations about the uses of health information, and provide objective evidence,” said Nicola Perrin, who heads the project.
The aim is to show how and why data can be used for care and research, what is allowed and what is not, what say patients have 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,” Perrin said.
The website also sets out to explain why it is important to use patient data to improve health and care, using case studies to demonstrate the 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.
Part of the problem the website wants to tackle is that the language 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,” said Perrin. “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.”
Public attitudes to using patient data
A number of studies have looked at how people feel about the use of patient data, and what they have found is fairly consistent. In general people are comfortable with anonymised data from medical records being used to improve health, provided there is a public benefit.
However, many are uncomfortable with the idea of companies accessing their health data and have particular concerns about information being passed on for marketing or insurance purposes.
Studies also show that the more information people have about how data is used, 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,” Perrin said. Healthcare professionals are particularly important. Doctors and nurses are the most trusted professionals in the UK and will be the best people to explain the benefits of using data to their patients.
Digital healthcare
New digital and data-driven technologies in healthcare, such as telemonitoring and the increasing reliance on machine learning and artificial intelligence, will have significant implications for public confidence, according to Perrin.
“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,” she said.
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