Data Use Register

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The data use register is a summary of the research projects that have been given approval to use health data through the West Midlands Secure Data Environment.

It shows what researchers are doing with the data so patients and members of the public can feel confident it is only being used in the right way and for the right reasons.

It also helps researchers understand the type of health information the SDE holds.

Approved projects have been reviewed by our data trust committee (DTC) to ensure research using data through the West Midlands SDE is in the public interest and carried out in the right way. Exceptions to this are data projects that have separate ethical approvals.

This data use register is currently in development and does not represent a full list of current or completed projects.

Safe People Safe Projects Safe Data Safe Setting Safe Outputs
Lead applicant organisation name Project title Lay summary Public benefit statement Latest approval date Dataset(s) name Access type Link
Pregnancy outcomes in women who have undergone induction of labour: an electronic health record cohort study

This study investigates what happens to pregnant women and their babies when labour is induced. Induction of labour involves treatments to start labour, often due to overdue pregnancy (past 42 weeks) or slowed baby growth. Recent advice recommends more inductions, as they seem to improve outcomes for women and babies. However, inductions increase hospital stays, adding pressure on maternity services.

We will analyse data from electronic health records (EHRs) of 20,000 pregnancies annually in West Midlands maternity services to compare outcomes in induced versus non-induced pregnancies. These EHRs, routinely collected by healthcare workers, include valuable data on pregnancy care, such as age, ethnicity, smoking, and weight.

By understanding the risks and benefits of induction, this study aims to improve care for pregnant women and support healthcare providers. Clearer guidance could reduce anxiety, avoid unnecessary treatments, and improve outcomes, enhancing the safety and experience of induction of labour.

The expected benefits of this project for patients and the NHS are significant. For patients, it could improve care by identifying the risks and benefits of induction of labour and providing clearer information about birth choices and outcomes. For the NHS, the findings could highlight capacity needs and bottlenecks, compare performance across trusts, and either provide reassurance or identify risks related to induction rates, helping guide service development during high-pressure times.

The study’s results could also support updated, evidence-based guidelines for managing induction of labour, promoting consistent, high-quality care across maternity services. By refining care pathways through data, the NHS can enhance maternal and fetal outcomes while maintaining a patient-centred approach. The public will benefit from improved safety, clarity, and efficiency in care, fostering greater trust in NHS maternity services.

04/11/2024 Maternity Badgernet Dataset (UHB), Maternity Badgernet Dataset (West Midlands) West Midlands SDE trusted research environment Not yet published
Prediction outcomes for postpartum haemorrhage: an external validation in electronic health records cohort study

This study investigates a risk calculator for postpartum haemorrhage (PPH), a potentially life-threatening condition where excessive bleeding occurs after birth. Drugs are routinely used during pregnancy to reduce PPH risk, with additional treatments available for higher-risk women. However, identifying those at risk is challenging, as many PPH cases occur in women without obvious risk factors.

A risk calculator developed in the USA aims to predict an individual’s PPH risk, but its effectiveness in the UK is unknown. Differences in diagnosis and care between the two countries may impact its accuracy. This study will test the calculator on UK data by analysing Electronic Health Records (EHRs) from West Midlands maternity services, which record around 20,000 pregnancies annually. These records, routinely collected by healthcare workers, include information on age, ethnicity, smoking, weight, and other risk factors.

By comparing pregnancies with and without PPH, this study will evaluate the calculator’s accuracy for predicting risk at the start of pregnancy. If effective, it could be used by women and healthcare staff to assess individual PPH risk. This study aims to improve care by refining PPH risk management, reducing risks, anxiety, and unnecessary treatments, ultimately enhancing safety and support for women and healthcare providers.

The expected benefits of this project for patients and the NHS are significant. For patients, it could improve care by identifying PPH risks and tailoring preventative treatments to those at higher risk. Women who need extra care would receive it, while others avoid unnecessary interventions, reducing stress during pregnancy.

For the NHS, the findings could prevent complications, improve outcomes, and reduce care needs, enabling more efficient resource allocation and potential cost savings. The results could also support evidence-based guidelines for managing PPH, ensuring consistent, high-quality care across maternity services.

By refining care pathways with data, the NHS can enhance maternal and fetal outcomes while maintaining a patient-centred approach. The public would benefit from greater safety, clarity, and efficiency in care, fostering trust in NHS maternity services.

04/11/2024 Maternity Badgernet Dataset (UHB), Maternity Badgernet Dataset (West Midlands) West Midlands SDE trusted research environment Not yet published
Developing and testing the feasibility of a National Musculoskeletal (MSK) Audit and Research Database for Community and Primary Care MSK Services

Background:

Musculoskeletal conditions, including back, neck, joint, and muscle pain, are a leading cause of disability in the UK and globally. Over 20 million people in the UK live with these conditions, causing over 23 million lost working days annually. Despite most patients being managed in community and primary care (e.g., Physiotherapy and GP clinics), there is no publicly available information on care quality, consistency, or equity across these services. A data collection platform is needed to gather musculoskeletal health intelligence for multiple services in the West Midlands, improving care quality and highlighting best practices.

Aim: To evaluate the feasibility of using the West Midlands Secure Data Environment (West Midlands SDE) as a platform to house enhanced health intelligence data for musculoskeletal services, improving care in community and primary settings.

Design/Methods: The study will recruit at least four large community services in the West Midlands. Standardised data collection will include patient-reported outcomes and experiences, service-level data (e.g., waiting times, staffing), and electronic health records (e.g., diagnoses, treatments). Adults aged 18+ consulting for musculoskeletal conditions will be included. Data will be shared with West Midlands SDE under appropriate permissions.

Realisable benefits to patients and the NHS include:

Routine, large-scale surveillance in Community/Primary care MSK services for the first time.

Local interactive dashboards for quality improvement, contextualised for commissioners, service providers, clinicians, and patients, with infographics and bite-sized reports.

GIRFT-style benchmarked reporting, enabling like-for-like provider-level comparisons.

Sharing best practices and identifying local challenges to support regional quality improvement.

Identifying inequalities’ extent and drivers to enable targeted improvement initiatives.

Determining best-value, most effective care models, with data supporting research and informing national policy.

Infrastructure for real-world evaluation of initiatives to improve MSK care quality.

Collaborative health intelligence addressing key questions for stakeholders, including patients, clinicians, commissioners, and researchers.

06/01/2025 MSK dataset West Midlands SDE trusted research environment Keele University
The following projects have been processed and supported by the West Midlands SDE but were not reviewed explicitly by the DTC due to the projects having separate ethical approvals
Queright
SONATA
SEON
OWKIN MSI
OWKIN HCOM
Somerset Cancer Registry – UHB
NHSBT
University Hospitals Birmingham NHS Foundation Trust Identifying and mitigating biases in perioperative prognostic models and clinical scoring systems (PMCS) How do we make sure that a patient gets the right treatment at the right time? One of the tools that doctors use to diagnose and treat patients is ‘scoring systems’, or scores. These use data from patients’ medical records to support faster, safer care, but there is an important limitation. They are only as good as the data that goes into them. If scores were based mostly on people of a certain age, gender or ethnicity, they may only work for people who ‘match’. If you don’t ‘match’, the score may not work reliably for you.

Why does this research matter? Without information about how well scores work, doctors can’t give patients good advice about whether or not they need surgery. Bad advice could cause harm to patients. This may be worse in patients from underrepresented groups.

These scores are used every day across healthcare, including deciding if patients need surgery. The journey patients take from seeing their GP, to having surgery, and recovering at home is called ‘perioperative medicine’. A report has identified that many common perioperative medicine scores might not work as expected. Existing research shows some of these scores were made for small groups of people who are not representative of the breadth and diversity of the UK. This could lead to underrepresented patients, such as those from minority ethnic groups, not getting the treatment they need when they need it.

This research involves using patients’ anonymous healthcare data to evaluate how well scores work for underrepresented groups. Statistical experts will run ‘external validation’ studies of each score. Findings will be shared through scientific papers, conferences, accessible videos with subtitles in several languages, and a new dataset to improve scores.
Clinicians will know whether a particular PMCS is accurate for the patient they are treating. Currently, they usually only know whether a PMCS works across the entire population, rather than for specific subgroups. Importantly, they will know if a PMCS should not be used because it is likely inaccurate.

Patients deciding on surgery will benefit as PMCS will only be used if they work for them as individuals. This helps patients and clinicians make the best decisions about their health.

Scientists will learn from issues identified with how PMCS have been created or used in the past. These insights will help ensure that future PMCS work better for everyone, not just a privileged few. These lessons may also guide the development of artificial intelligence tools in healthcare, making them more equitable and effective for all.
11/07/2024 PATHWAY Research Data Hub: PWY018 dataset West Midlands SDE trusted research environment Not yet published