What are we trying to do?

The Greater Manchester Care Record (GMCR) is a shared care record that brings together patients’ electronic health records from a variety of sources such as GPs (primary care) and hospitals (secondary care). It is primarily designed for clinicians when treating patients, but one of the secondary uses is for researchers who can use anonymised extracts of the data to answer important research questions.

 

Why is this important?

Research on data like that in the GMCR is called observational research. Observational research on real-world data is messy and prone to a range of biases, many of which are undetectable. This is why a randomised clinical trial remains the gold standard of health research. However observational research does have several advantages: the data is abundant; the cost of research is relatively cheap; studies are quick to run; and perhaps most importantly, it can answer questions about what happens in the real world. An RCT may show how well a vaccine can work under certain conditions, while observational research can show how effective it is in practice.

The data in the GMCR can answer a vast range of research questions on mental and physical health, from cancer to COVID, and diabetes to depression. The demographic data also allows for the identification of health inequalities around age, sex, ethnicity and deprivation. Studies performed in the GMCR will feed into national guidelines and change clinical practice and patient treatment for the better.

 

How are we doing it?

We have established a process that allows researchers to request data extracts. Projects must explain clearly what data they require, why they need it, and how they plan to perform their analysis. Each of these bits is then checked by domain specialists, before being approved by an independent group.

A small team of Research Data Engineers (RDEs) work closely with each project team to extract precisely the data required. The RDE also ensures the data is cleaned, and structured in a way that makes the analyst’s job easier. Over time we are building up a library of clinical code sets, electronic phenotypes and reusable code. This ensures consistency and comparability between projects, and also makes the extraction process quicker.

 

Who are we working with?

• Health Innovation Manchester
• NIHR Greater Manchester Patient Safety Translational Research Centre
• Greater Manchester Health and Social Care Partnership
• Graphnet Health

For more information on the technical aspects of the GMCR please see our GitHub project page: https://github.com/rw251/gm-idcr.