Using NHS routinely collected data to power PhD research
Aims
Three PhD projects have used routinely collected health data from NHS Trusts to gain insight into healthcare services including mental health services, integrated care systems for respiratory disease, and care homes.
Overview
Routinely collected health data is information collected for purposes other than research, examples include electronic health records, health administrative data, and disease registries. Routinely collected health data holds huge potential for research into healthcare access, outcomes, and inequalities, allowing researchers to answer key questions of relevance to healthcare providers using vast amounts of information whilst avoiding the typical costly data collection phase. However, the nature of routine data can limit its applications in research, with common issues associated with data quality, completeness, and availability.
Three PhD students based within the Centre for Health Informatics, Computing, and Statistics (CHICAS, Lancaster Medical School), collaborate with NHS Trusts across the north of England using routine NHS data as their primary data source for research:
Rachael Mountain works with University Hospitals of Morecambe Bay NHS Foundation Trust, evaluating integrated care systems for chronic respiratory disease. Rachael has access to the Morecambe Bay Community Data Warehouse, a large store of local routine healthcare data across primary, secondary, and community care that can be linked at individual-level via pseudonymised NHS Numbers. Rachael works closely with local clinicians to evaluate the impact of the Morecambe Bay Respiratory Network (MBRN), an integrated care initiative aiming at improving the quality and efficiency of services for chronic respiratory disease patients. Projects so far have included: modelling space-time patterns in referrals to outpatient respiratory clinics, assessing the capacity of electronic health records to measure diagnostic performance, and comparing patterns in presentations of COPD exacerbations in primary and secondary care.
Hayley Lowther-Payne works with Lancashire and South Cumbria NHS Foundation Trust, a community mental health trust covering Lancashire and South Cumbria, to understand inequalities in access to mental health services during the COVID-19 pandemic. Hayley secured Health Research Authority (HRA) approval in order to access two pseudonymised datasets from the Trust; one with all referrals to mental health services and another with all contacts with mental health services, over a period of four years. Hayley works with the colleagues in the Business Intelligence team at the Trust to interpret patterns in the data over the course of the COVID-19 pandemic and understand how demand for and access to mental health services in Lancashire and South Cumbria changed. The project is particularly focused on understanding access to mental health services for underserved population groups, such as lesbian, gay, bisexual, and transgender (LGBT+) people.
Alex Garner works with County Durham and Darlington NHS Foundation Trust, investigating secondary care usage for care home residents and evaluating digital health technology interventions. Working with the trust, Alex accessed linked secondary and community care datasets containing all service users, as well as datasets from an NHS digital technology introduced to care homes across the North East of England. These datasets were held in a Trusted Research Environment, maintained by Durham University which could be accessed remotely. Alex worked with staff from the Trust to evaluate the impact of the care homes digital technology on secondary care utilisation, with interest from other NHS Integrated Care Boards surrounding implementation in wider areas. This work has now been published in Age and Ageing. Alex has also used this data to investigate patterns of healthcare service utilisation for care home residents during the COVID-19 pandemic.
Results and Outcomes
Tab Content: For Partners and Engagement
By working closely with local Trusts, research questions can be generated to answer key questions of relevance to healthcare providers, patients, and service users. Each of the projects has experienced input from Trust representatives.
Example: Hayley’s initial research plans were discussed and co-produced in collaboration with key colleagues at the Trust, and were also presented to the Trust’s Service User Research Group for feedback to refine the focus of the research questions.
The data collected routinely in Trust systems is used to better understand the populations they serve and to improve service planning and delivery.
Example: Rachael’s work investigating outpatient referrals to local respiratory clinics has been shared at local workshops as evidence to promote integrated care to clinical and operational leads.
Projects that collaborate with Trusts can provide immediate local applications with the potential to influence national policy through publication of findings.
Example: Alex’s digital technology evaluation has been presented to NHS Clinical Commissioning Groups to promote the uptake of digital technology in care homes.
Researchers can help build capacity within NHS Trusts to identify new ways to utilise the data they collect routinely, for example understanding inequalities for understudied groups, and explore avenues for research funding.
Example: Research is underway assessing the quality of diagnostic coding with a view to improving the research utility of data collected in care in the future.
Example: Hayley’s work builds on a research internship undertaken by an LSCFT colleague on the impact of COVID-19 on access to mental health services by trying to understand how COVID-19 influenced inequalities for understudied groups.
Tab Content: For Academics
Routinely collected health data typically covers the entire user base of services. This provides researchers with large amounts of data from which to generate representative results.
Example: Each of the projects are utilising a significant amount of routinely collected health data from specific geographical areas and services in order to generate wider learning about healthcare service delivery.
The large-scale, observational nature of the data presents opportunity for advanced data science and statistical methodology to provide innovative solutions for fully utilising the data.
Example: Rachael’s outpatient referrals work looks at the entirety of outpatient referrals in the Morecambe Bay area. The work involves spatial mapping of respiratory patients to provide a baseline denominator to work off. This work has now been published in BMC Health Services Research.
Example: The PhD students have developed their knowledge and skills of these innovative methodologies that can be shared in future roles and with other researchers.
Example: Work can be used as part of a growing evidence base to support further investment and development of the NHS data infrastructure and data access system.
Example: Rachael, Hayley, and Alex’s outputs from these collaborations have been published in high impact journals – BMC Health Services Research and Age and Ageing.
Example: Alex’s work was presented at the Health Data Research quinquennial review panel. Hayley’s work was presented at the Health Data Research 2024 conference.
Example: Research collaborations with Lancashire Teaching Hospitals has meant Alex and other students in LMS are involved in the Secure Data Environment programme, which aims to provide a platform for significantly improved access to NHS data for researchers.
Close working relationships with clinicians and Trust data analysts can provide vital insight into the real-world settings that the data represents, allowing a better understanding of the variables collected, potential limitations to the analysis, and the healthcare services themselves.
Example: The trust have been vital to understanding of the data Alex accessed, helping gain an understanding of how variables are recorded, and limitations in them such as when assumptions are made.
Example: Regular meetings held with the Trust to discuss the data and emerging findings have helped Hayley to gain real insight into what the data represents and gain a better understanding of how service users access mental health services in the area.
Collaborative work with Trusts has the potential to produce ideas for future research funding grants and collaborations.
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