We will be holding our next 1-hour educational session for use MY data Members on Friday 17 June, 15.00 – 16.00. In this session we will explore the reasons why it takes so long for researchers to get access to the data they need in order to start their research.
This topic has been requested by several of our members who, having heard stories about research being stopped or abandoned because of problems in researchers getting access to the data to do the work, despite having the ethics in place, having patient support, having legal permissions and the team ready to do the work, want to understand why. So in this session we aim to ask the question, exactly what is the problem here?
To give a first-hand account of the barriers researchers face trying to get hold of the data they need, we have invited Professor Richard Feltbower to join us.
Richard is the Director of the Yorkshire Specialist Register of Cancer in Children and Young People. His current research involves the use of linked datasets such as primary/secondary care and the National Pupil Database to evaluate long-term outcomes including mental health, educational attainment and treatment toxicity. He is a member of the Childhood, Teenage and Young Adult Cancer Expert Advisory Group within Public Health England/NHS Digital and the NCRI Teenage and Young Adult Clinical Studies Group. He is also Chair of the CCLG Epidemiology and Registry Group.
But despite Richard being one of the most respected researchers in this area, he still experiences serious problems in basic data access. During this session Richard will walk through all the steps that he has to take to gain access to data to do his work, describing where he has experienced delays, his frustrations and suggestions for areas that need improvement.