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

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

3. 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

4. The CLOSER studies

5. 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

6. 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

7. 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

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

9. 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

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

11. 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

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