Empower joins for launch of Understanding Patient Data
Empower: Data4Health was privileged to join a hundred patient organisations, academics and policy makers at the Wellcome Trust this week to launch the new Understanding Patient Data initiative.
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, and Empower - alongside others such as Cancer Research UK, Genetic Alliance, NHS Digital, NHS England and the Department of Health - were gathered to chart a course forward for patients and the health system.
Over the past year a taskforce, led by Wellcome’s Nicola Perrin, has been working hard with patients, the public, and specialists to explore and define the language that we must all start using if we are to communicate the value of patient data effectively.
The language used to describe the uses of patient data is, without a doubt, confusing. Words like ‘pseudonymised’, ‘key-coded’ and ‘de-identified for limited disclosure’ often mean similar things and frankly disengage the public and patients. We won’t overcome the barriers to wider and more effective use of medical data unless we start carrying people with us. And we can't do that unless people know what we’re talking about. Indeed, how can you consent to your data’s use if the language around it is so impenetrable it’s easier to just say no?
Today was the first big step on what is now hopefully a much shorter road to creating the health system we all want to see and we know is achievable.
If your organisation is not already involved we strongly suggest getting involved in the Understanding Patient Data team.