THE PATIENT’S PERSPECTIVE ON DATA SHARING FROM MEDICAL IMAGING TRIALS

Interview with Judy Birch, patient advocate

Maybe you can first tell us about your motivation to be engaged as a patient representative in the field of radiology?

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I’ve had an interest in radiology and been a member of the ESR Patient Advisory Group for a long time. This is alongside founding and managing the Pelvic Pain Support Network with involvement as a patient representative in public health funded research at National and European level. I’ve seen some huge changes over this time.

What kind of changes?

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In terms of the consent for trials. Several years ago, you weren't asked to anything about future research. Now there's always something asking about consent for future research.

Would you agree to give your consent for future research when undergoing a trial and thus contribute to further data sharing?

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I'm not sure I am completely on board with all of this because there obviously are some concerns. I think there's a real need to raise awareness of data research practices. Some data storage facilities are called trusted. I think there's quite a lot of skepticism around the word trusted because trust is earned, not given.

So, you would be concerned about data might leave trusted research environments?

We've learnt in recent years from Facebook and misuse of data, and I do think that there is more concern now on the part of the public as to what can happens to their data once it gets outside. Will it end up in the hands of fraudsters, insurance companies or criminals or in some countries that we don't want them to have access to that data?

What measures do you think could be helpful for generating more trust when providing data as a patient?

We have to have meaningful patient and public involvement. And it isn't just a tick box exercise. There's acceptance, mistrust and therefore a strong governance is essential to this task. And we definitely need vetting and monitoring of individual researchers accessing sensitive data.

Of course, preferably I would want my data to be used by research, by hospital academics, to help other patients.

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