I attended the Administrative Data Research Network (ADRN) annual conference in Edinburgh, 1-2 June 2017. There were around 300 delegates with almost 100 talks. Attendees were from across the UK, Korea, Italy, Germany, Australia and the United States, this included representative from various Governments, Funders, Academia & members of the Scottish Public Panel.
The Administrative Data Research Network gives trained social and economic researchers access to linked, de-identified administrative data in a secure environment.
What is routine data?
Definition of routinely collected administrative data: Information collected primarily for administrative (not research) purposes. These data are collected by e.g. hospitals, schools, police, government departments (plus many more!) for the purposes of registration, transaction and record keeping to enable the delivery of that service. For example, patient records are created to enable the clinician to record diagnoses, prescriptions, referrals and tests requested.
Integrating research in the Centre for Trials Research
I attended because of the relevance of this research network to a number of the studies being undertaken within the Centre for Trials Research (CTR) as well as relevance to my role as data linkage | routine data lead for the CTR.
I was keen to attend talks to hear about other researchers using similar data sources as some of the studies I work on such as health, education and social care data as this will help us to learn how to both clean and analyse the data and how to interpret the findings.
The governance around using routinely collected data is also of interest and hearing how other studies/departments have set up their infrastructure and processes is relevant to help improve the Centre for Trials Research. There are changes to how data are defined in the new GDPR that may have an impact on the use of these data, as well as the new Digital Economy Act that is now in effect.
I attended a range of talks and thought I’d share some of the highlights for me at this conference:
A number of talks touched on public engagement / public involvement for researchers using routinely collected data. Two talks in particular did a great job to summarise how far we have come with public engagement but how much more we need to do.
A Keynote talk from Julia Lane [Title: Building sustainable accessible data infrastructures: ideas from the US] talked about an interesting concept around informed consent and how the information provided is either comprehensive or comprehensible – never both.
Carol Porteous presented during one of the parallel session [Title: Are publics a barrier to administrative data research: An exploration of the public influence on administrative data research in the UK] about public involvement/engagement as an ongoing activity that researchers must continually update, include and evolve. Carol also talked about future work required, specifically in this area of research. It was recommended that there should be specific focussed activities on using routinely collected data, such as geographically specific (when data are being used from that area); and topic specific (for example data retention & reuse of data).
There were many talks that intended to present on the results or emerging results of their research but instead could only talk about their planned work. This was because of data access issues, and interestingly , these delays were not specific to one data provider or one country. Having had to present similar presentations in the past where we had hoped to have data, I understand the frustration of this issue. There was an underlying theme at this conference around improving issues such as data access. I’m currently writing a paper that discusses issues such as these, but in a trials setting – hearing these talks and the frustration has spurred me on with my writing to address this issue rather than to accept it as an inevitable delay when using routinely collected data.
New data sources
I really enjoyed learning about new data sources (that is, new to me) that researchers have used to answer their research questions. Some examples include accessing housing related support service data to look at women and children’s relocation journeys to address hidden domestic violence; Using National Crime Agency data to look at illegal consignments; and Alcohol retail outlets and Tobacco retailer registers and combining with health outcome data to look at how the area where you live can contribute to health behaviours.
I attended many more presentations and would be very happy to chat more about this area of research for anyone who is interested!