The importance of accessing patient administrative data for longitudinal research to improve patient outcomes Professor Alison Park, UCL

Today About longitudinal research Linking survey and administrative data The current context Challenges and next steps

Longitudinal studies Follow the same people over time Capture diverse range of data Help us explore patterns of change, the dynamics of individual behaviour and the ways in which early circumstances shape later outcomes

The CLOSER studies

Linking patient and survey data What linkage involves Why it benefits surveys Frequency, detail, objective measures Why it benefits administrative datasets Understanding of context, improved understanding of accuracy The whole is greater than the sum of its parts

For example: Doll and Hill (1954) Survey: smoking habits of doctors Administrative data: cause of death Demonstrates link between smoking, lung cancer and cardiovascular disease

For example: Zhou et al (2016) Survey: details about circumstances, lifestyle Administrative data: birthweight, cancer registry Heavier birthweight may be associated with increased risk of prostate cancer

Current context /1 Huge potential offered by digitisation of data collection and management

Current context /2 Key current policy developments National Data Guardian for Health and Social Care - Review of Data Security, Consent and Opt-Outs Wellcome Independent Patient Taskforce Digital Economy Bill

Current challenges Legislative framework Risk averse culture Lack of consistency across data controllers Lack of expert resource Poor data infrastructure Longitudinal-specific issues

Where next? Current developments are encouraging But is there enough focus on: Incentivising sharing? Balancing risks of not sharing with the risks of doing so? Tackling data silos? Need clear voice about importance of digital records for public benefit research

Thank you alison.park@ucl.ac.uk @parkali www.closer.ac.uk @CLOSER_UK