Research Code of Practice
A proposed Code of Practice for the conduct of research using data held in CHC Trustworthy Research Environments
This proposed Code of Practice specifies acceptability criteria and governance rules for the conduct of research using data held within Connected Health Cities Trustworthy Research Environments, which might be undertaken by public or private research organisations. It is being more widely shared to encourage review and feedback from health data research communities, with the eventual aim of encouraging convergence on a common code of practice and rules for reusing health data for research.
The four city regions who form the Connected Health Cities have each established mechanisms and permissions to generate repositories of anonymised data derived from health and care organisations, patients and citizens in their part of the north of England.
It is the intention that the data in these repositories should be used in agreed ways for purposes ranging from quality improvement across the north of England and for research (i.e. fostering Learning Health Systems), all with the end goals of improving the health of the population and contributing to wider knowledge.
For each approved research study, the relevant data custodians will create an extract of health and care data, anonymised to defined standards, as the data set required for that particular approved research study. Researchers in that study will only have access to this anonymised data set.
There is a need to establish a formal basis on which research uses of data by external organisations are permitted, with corresponding terms and conditions. The agreed final version of this Code of Practice is intended to define this basis and the (governance) terms, with the aim of establishing a common position that is endorsed by all four CHC regions. It is presently being widely shared to gather feedback. Responses to this proposed may be sent to firstname.lastname@example.org.