What is the role of routinely collected data in helping set the future sexual health research agenda in Scotland? Dr Lisa McDaid, Programme Leader for Sexual Health at the MRC/CSO Social and Public Health Sciences Unit, University of Glasgow, explores this.
Social and public health research is reliant on understanding human behaviours, such as smoking, drug use, sexual activity and relationships and to do so requires the collection of data, which in turn is resource intensive and expensive. Making better use of existing, routinely collected data is likely to be cheaper than initiating large-scale surveys, could give access to high-risk and/or hard-to-reach populations, and provide the means to respond quickly to immediate research questions. The potential use of electronic patient records (EPR) is widely recognised in the UK and this year saw substantial investment in a UK health informatics research institute, to be known as the Farr Institute. Specialist sexual health settings present specific challenges to EPR systems, not least because of enhanced requirements from patients for discretion and confidentiality, the need for rapid turnaround, the breadth of clinical care in sexual health, and the use of dispersed, often community-based, locations and third-sector groups in service provision.
A centralised web-based electronic clinical record system is in use across all specialist sexual health settings in Scotland (Scottish National Sexual Health System – NaSH), with over 700,000 patients and more than 300,000 attendances recorded annually. The breadth of data collected includes medical, family and sexual history, reproductive health and contraception, social and lifestyle factors, test requests/results, patient actions/recalls, prescriptions, symptoms, physical examination details, partner notification, and referrals. Clearly this has potential as a source for sexual health research and we conducted a scoping review to assess the key issues in routine use of NaSH data to better yield benefits for sexual health research in Scotland.
In our review we highlight that although anonymised data views have been set up, not all NHS boards complete all data fields and use of NaSH in real time has been problematic and variable. Most social and lifestyle risk factors (except for sex, age, postcode and ethnicity), likely to be of interest in social research, are not currently included in the national dataset. Inconsistencies in the data collected can also occur across repeat visits. For example, recent sexual contact could be recorded with a partner of the same sex, at the same time as the lifetime sexual history indicates contact only with an opposite sex partner. There is no check back to highlight inconsistent data in real time to the user. We identified a critical issue of data over-writing, in that the data views only reflect current, visible data. Whilst episode-based data remain true, lifetime sexuality and smoking status, for example, can change over time, and the ‘original’ or preceding data are written over. This limits use to cross-sectional analysis and precludes any longitudinal research. Furthermore, longer term retention of NaSH data and availability to researchers out with the NHS are issues that have yet to be addressed.
NaSH data could benefit sexual health research, but the quality of base data is fundamental and we need to identify the key information that should be on the system. There is a potential conflict between the need for comprehensive and complete data for research purposes and the need for a routine clinical system to function in a routine way. However, concerns over data collection, storage and retention should be considered within the context of the wider public health benefit. Greater use of NaSH data could aide in the assessment of the indicators set out in the Scottish Government’s Sexual Health and Blood Borne Virus Framework and have a key role in the future sexual health research agenda in Scotland.