E065 The importance and challenges of continuing to use data beyond the age of 16 years old in research

Abstract

Background/Aims Many childhood-chronic conditions, such as juvenile idiopathic arthritis (JIA), can continue into adulthood. Investigating long-term outcomes for patients is vital to generate a bigger picture of the clinical, physical, social, and psychological impact of chronic conditions over time. When children and young people contribute to research, a parent/guardian will sign the consent form at enrolment. Studies can then be linked with NHS national datasets (hospitalisations/cancers/death) for a more complete picture of a patient’s journeys within healthcare. However, without additional patient consent, linkage must stop at 16 years old, and there are no straightforward mechanisms within the research ethics framework to continue linkage. Methods There is growing concern and confusion around why data collected post-16 years old may not be used in research without explicit consent. Re-consent might not be possible at this point for several reasons. Firstly, the person may have been discharged from clinic as they are in remission. Secondly, they may have moved to an adult rheumatology centre that does not want/is not sufficiently resourced to participate in research. Finally, there may be personal circumstances (financial/educational/personal) which mean they are not able to continue within research but would like their data to still be used. This may be particularly relevant to people from more deprived areas, or ethnic minority groups, as data suggests people from more deprived groups are less likely to continue into adult services. By stopping data linkage at age 16 years, research into adults with JIA would be at increased risk of excluding data from individuals that are in remission, from under-resourced NHS trusts, from more deprived areas, or from minority/other under-represented backgrounds. Results If linkage could be continued for all patients, regardless of additional consent, this bias could be avoided, meaning research outputs are more applicable to all people living with JIA. Feedback from patients and families highlight that they “would not expect to be asked to reconsent”, and instead “assume this consent/linkage would continue into adulthood”, regardless of when they (or their guardian) gave initial consent. Some are even “surprised and disappointed to hear that their data are not being used in a way they believe it should be”. There are real concerns around losing important data, with some families highlighting that “not linking information that is already available would mean there is a black hole once someone becomes an adult”. Conclusion We are advocating for all data linkage to continue beyond 16 years of age without the need for additional consent. We want all experiences to be accounted for, regardless of hospital or background. Through this initiative, we want to ensure that paediatric and young people’s research remains a priority and receives the same amount of attention as equivalent research in adult-only conditions. Disclosure L. Kearsley-Fleet: None. J. Leslie: None. N. Shaw: None. M. Johnson: None. K.L. Hyrich: None. J.H. Humphreys: None.