It’s a new year and this week we hear from a new researcher, namely, Dr David Henderson. David is a Research Fellow at Edinburgh Napier University and Scottish Centre for Administrative Data Research (SCADR). He is no new face to the eCRUSADers scene and has built up a wealth of knowledge and expertise in the administrative data sets he has worked with over the last four years. In particular, David has worked closely with the Scottish Social Care Survey (SCS), both at local (Renfrewshire Council) and national level. His PhD work utilised the national SCS linked to Prescribing Information System data, Unscheduled Care Data Mart and the NHS Central Register. Additionally, David has worked with the Scottish Programme for Improving Clinical Effectiveness in Primary Care (SPICE – PC) data.
In this post, David describes his PhD work and provides an outstanding demonstration of the wealth of knowledge that research using administrative data can offer. He also gives us an insight into some of the unexpected externalities that can significantly impact project timescales, but which are hard to plan for. Similarly to our previous Researcher Experience posts from Dr Catherine Hanna and Matthew Iveson, David highlights timing as one of the major difficulties he has experienced throughout his research career using administrative data.
David’s positivity emanates throughout this blog post and he does an excellent job at echoing the feelings that I hear time and time again from researchers in this area. Those are, a genuine understanding of the need for the legal processes in place to protect patient data, coupled with frustrations with the parts of the processes which inhibit researchers abilities to use this data to its full potential, all together with a positive attitude that things are slowly but surely improving. As David points out, things are changing in Scotland and we look forward to hearing very soon from the Chief Statisticain Roger Halliday, on the Scottish Government’s plans for the new Research Data Scotland.
Brief overview of my research
Using the linked data set described above, the focus of my research has been investigating the association between multimorbidity (more than one long-term condition) and social care receipt. I am also analysing interactions between health and social care services, with a particular interest in unscheduled care.
Good social care data has been difficult to come by in the past – not just in Scotland, but internationally. I have been lucky to be one of the first group of researchers to get access to the Social Care Survey collected by the Scottish Government in a format that can be linked to health-based data sources.
So far, provisional results show us that increasing age and severity of multimorbidity are associated with higher social care receipt. This was anticipated, but we have never been able to show it empirically before the cross-sectoral linkage.
We have also been able to describe the receipt of social care by socioeconomic position (SEP) using the Scottish Index of Multiple Deprivation (SIMD). This is new and, to my knowledge, hasn’t been described elsewhere on such a large scale. Here we find that those with lower SEP are more likely to receive social care. (All these patterns are shown in the figure below). However, due to a lack of good measures, we can’t tell if the provision of care matches need for care.
My latest piece of work has been looking at whether receipt of social care influences unplanned admission to hospital. Using time-to-event (survival) analysis we can see that, for those over 65, people who receive social care are twice as likely to have an unplanned admission (again these results are provisional at the moment).
© David Henderson
Summary challenges faced
The barriers I have faced are, no doubt, similar to others using linked data -the main one being time. Approvals, extraction, linkage etc. all takes considerable time and as a researcher you are not in control of these timescales. A good example is shown by a sub-project for my PhD which was to use social care data from one local authority area only. The council in question were exceptionally helpful and keen to share data. They were very patient whilst I organised ethics and approvals on the academic side. However, by the time I was ready to talk data sharing agreements they had operational pressures (specifically the 2017 local elections) which tied up their legal team. After this we were all hopeful about making progress, but a certain Prime Minister went for a walk in the woods at Easter and decided to call a general election! Cue another 6-week delay until the legal team could start negotiating an agreement. We eventually got there but this illustrates that the data controllers are at the mercy of higher forces as well and it is impossible to set meaningful deadlines.
I am very fortunate to be in a position to keep working with my PhD data in my current role and keep asking questions of the large amount of data we have. However, I have moved university in order to this. This means I now have to repeat the process of ethics, data sharing agreements, privacy impact assessments etc. This is absolutely necessary as my current employers need to make sure that all legal aspects are covered, but there is nothing more soul-destroying than recreating the (significant) amount of work that goes into the required forms (initially completed two years previously). Fortunately, work is afoot at the Scottish Government to make this process obsolete and centralise access to research data sets – however this is still in early stages and we are currently unsure as when this will be operational or what exactly will be available. For now, the pain must endure!
My reflections
Although there are difficulties in using administrative data for research purposes and delays can be frustrating at times, it is still (incredibly) a really rewarding process. The ability to gain new insights from previously unseen data is something that should excite any researcher. More importantly, data linkage offers the potential to improve society by answering questions that can’t be asked with traditional methods. Well worth an extra ethics form (even if I grumble about it!).
Public Benefit Privacy Panel Timelines
Preparation of PBPP application: Around 3 months
Submission to initial PBPP approval: Around 1 month
PBPP approval to (initial) data access: Around 6 months (plus 3 months for social care data)