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DATA-CAN patient members take the lead in showcasing the benefits of health data to the public

27th January 2022
Two DATA-CAN patient group members have played a leading role in developing a case study library that showcases the benefits to patients and the public of using health data for research.

The case study library has been published by the European Institute for Innovation through Health Data (i~HD). i~HD is a European, not-for-profit organisation facilitating the optimal uses of health data.

Pete Wheatstone (DATA-CAN patient group chair) and Sue Trant (DATA-CAN patient group member) worked with the i~HD over the last 12 months to collate, draft and edit the case studies that demonstrate the benefits of health data in research and how patient data is protected. 

The case studies cover topics including how data can help patients and clinicians make decisions about the best treatment options after breast cancer surgery; the role of data in an international trial to find treatments for COVID-19; how patient data on blood cancer patients is helping diagnosis and treatments and many more.

The aim of the case study library is to boost public engagement and understanding in how health data can be utilised by researchers for patient benefit.

Pete Wheatstone, Chair of the DATA-CAN Patient and Public Involvement and Engagement (PPIE) Group, said,

“Many patients are comfortable with their health data being collected so long as their privacy is protected and safeguards are in place. But we want patients and the public to really understand what happens to their data when it is used for research and realise the many benefits that health data research can have for the diagnosis, treatment and care of patients with a range of conditions.”

Sue Trant, DATA-CAN PPIE Group member, added,

“There are so many fantastic examples of how health data is making a difference to patients. The i~HD’s case study library brings together a range of exciting research projects that are using patient data to make a real difference.”

The i~HD is seeking to expand their case study library across more disease areas.  

Browse the i~HD case study library here.