The importance of transparency and openness in research data to drive patient benefit—Examples from the United Kingdom

"Key points

• Openness in research is discussed in many guises and brings many benefits and there is a need to join up, share good practice and talk a common language to make maximum progress.

• Importance of open publication as a key step to increasing trust and reducing waste in research.

• There is a need to be careful about the language used and it is crucial that the right safeguards are in place to protect people's personal data. Personal data should not be 'open', and discussing it in this way risks its availability and associated use.

• Need to start with trust and involvement of patients and the public to ensure maximum benefit can flow from data."