Overview of my research
My research uses electronic health records to identify risk factors for health problems. In my PhD, I linked two research datasets of people with acute stroke (N~200) to their electronic health records to identify whether they have subsequently developed dementia. I used these linked-data to identify risk factors, present at the time of stroke, that are associated with an increased risk of post-stroke dementia. I am now using my epidemiological skills in my current post-doc where I am working with larger datasets (N<53,000) to identify environmental risk factors for depression across the life-course.
I have been working with linked Scottish administrative data from 2019 and have used the following data in my research studies:
- SMR01: General/Acute Inpatient and Day Case
- SMR04: Mental Health Inpatient and Day Case
- NRS Death Records: National Records of Scotland Death Records
- PIS: Prescribing Information System
- SMS1947: Scottish Mental Survey 1947
- SHARE: The Scottish Health Research Register and Biobank
Summary of any challenges faced
Currently, researchers are unable to link to Scottish primary care data at a national level. My current research projects involve identifying cases of depression in electronic health records (e.g., through using hospital admissions and the prescribing information system). However, depression is often diagnosed in primary care by a General Practitioner, yet primary care data are not currently available to link to at a national level. Researchers in Scotland who study conditions often managed in primary care (e.g., women’s health, hypertension) will face similar challenges. In July 2023, I led a meeting of GP’s, researchers, and members of the public to explore their views on using linked de-identified primary care data for research in Scotland. The meeting emphasised the interest and enthusiasm for using primary care data in research and highlighted the importance of working with healthcare professionals to understand these data.
Completing data-linkage projects within the timeframe of the PhD: Designing your study protocol, gaining approvals, and working with external organisations to link and access administrative data can take time. This is particularly challenging for PhD students and early career researchers who often have fixed-term funding/contracts. My advice for researchers starting a new data-linkage study would be to also set up projects that use different research methods to address your research questions. For example, a systematic review exploring the existing literature could help to shape the variables you look at in your data-linkage study. Or a survey/focus group with healthcare professionals and/or patients to explore how your work could feed into clinical practice. These projects could progress whilst you are waiting for access to the linked-data.
Thoughts for fellow and future eCRUSADers
Here, I have outlined my three top tips as an epidemiological researcher in Scotland:
- Collaborate: When you are an early career researcher, it is important to work with and learn from more experienced researchers who are familiar with conducting data-linkage research. I have found it particularly helpful to chat to Data Science Researchers at conferences including MQ DATAMIND Data Science Conference, and the HDR UK Scotland Community Meeting.
- Speak to healthcare professionals: When designing your research study, it is important to understand what information would help healthcare professionals care for their patients. Administrative data is not collected for research purposes; therefore, it is important to speak to the people who are reporting this information (e.g., to understand how particular health conditions are coded).
- Here are some of the resources that I have found helpful:
Public Benefit Privacy Panel Timelines
Project: CT head features associated with post-stroke dementia: A Scottish data linkage study
Preparation of PBPP application: approximately 6 months (includes designing project, identifying relevant datasets, preparing Lothian Research Safe Haven)
Initial submission to PBPP approval: approximately 5 months
PBPP approval to data access: approximately 9 months (during the COVID-19 pandemic)
Publications using administrative data
Ball EL. MQ DATAMIND Blog. An Early Career Researcher At Data Science Meeting – June 2023 https://www.mqmentalhealth.org/an-early-career-researcher-at-mq-datamind-meeting-2023/
Ball EL. Predicting post-stroke cognitive impairment using acute stroke neuroimaging and other biomarkers (Doctoral dissertation, University of Edinburgh).
Iveson MH, Ball EL, Whalley HC, Deary IJ, Cox SR, Batty GD, John A, McIntosh AM. Childhood cognitive ability and self-harm and suicide in later life. medRxiv. 2023:2023-02.