On 29 January, an interactive workshop on “Patients in the World of Big Data” was held in the Postgraduate Centre at University Hospitals Birmingham NHS Foundation Trust (UHB).

The event was attended by 23 people, and helped patients understand what happens to their data, discuss issues around patient consent, and consider the importance of consent in the world of "big data".

The interactive event saw delegates answering a number of questions anonymously throughout the day.

Sessions in the morning included a general introduction to Your Care Connected (an electronic system that allows medical staff to view information from a patient’s GP record) and how people feel about companies collecting social data through loyalty cards and apps.

Additional presentations were given by Information Governance, explaining how UHB uses and safeguards patient data, and Consultant Cardiologist Will Bradlow, who presented a research project which will use large amounts of health data to diagnose a rare heart condition called hypertrophic cardiomyopathy.

Workshop sessions in the afternoon saw groups discussing a variety of questions around data consent, including discussing consent forms and whether patients feel that the information provided allows them to give fully informed consent.

Throughout the event feedback was recorded and will be compiled into a report available to all attendees and any other interested parties.

The event was organised by Margaret O’Hara, Patient and Public Involvement and Engagement in Research Lead, and Will Bradlow. 

Margaret O’Hara said: “This was the first public event we have run on data sharing. We wanted to pilot an interactive style of workshop so that we could really explore the public’s views.

“I’m really pleased with how it went and I’d like to thank everyone who took part for their enthusiastic contributions.

“Thanks to technological advances, patient data has never been more useful, so it’s vital that patients are part of the conversation about what they are consenting to, and what could happen to their data.

“We’re hoping this workshop will be the first of many concerning data and consent, as lots of interesting questions were raised which need further exploration.”