A cohort is any group of people with a shared characteristic.

In this case, the Follow-COVID cohort is all of the people who volunteered to participate in the Follow-COVID study.

The Follow-COVID data or dataset is all of the information provided by the people involved in the study (the Follow-COVID cohort) which researchers use for their research.

The Health Data Research Innovation Gateway is a portal enabling researchers and innovators in academia, industry and the NHS to search for and request access to UK health research data.

The Gateway was developed with input from patients and researchers, and provides a library of information including data held and managed in the NHS, research charities, research institutes and universities. Researchers can search, browse and enquire about access.

The Innovation Gateway does not hold or store any patient or health data.

Click here to find out more.

Click here to visit the Innovation Gateway.

CaRROT-Mapper is a piece of software that was developed by the wider CO-CONNECT development team, based at the Universities of Nottingham, Edinburgh and Dundee.

Metadata is data that describes or gives information about other data.

In this case the metadata is describing or giving researchers information about what is happening in the Follow-COVID cohort.

This may include the headlines, table column names, types of data and totals.

How is the cohort’s data organised? How many headings or categories are used?

What are these categories called?

What types of data do these categories organise? Yes and no questions? description boxes? multiple choice answers?

How many women are in the cohort?

How many people in the cohort have asthma?

To learn more about, and see further examples of metadata, please visit: What is Metadata (with examples) – Data terminology (dataedo.com)

CO-CONNECT are collaborating with a range of organisations who host and manage data. They are the legal data controllers of the data. We term them CO-CONNECT “Data Partners”.

A Data Source (or cohort as written in this article) is a specific data set hosted and managed by the Data Partner.

Mapping can be defined as transforming the data to fit a widely agreed upon standard structure so that it can be more easily compared with other datasets.

Essentially, with mapping you are aiming find a common format that can be used to link the data of multiple datasets together.

It can be viewed a bit like phone chargers – a few years ago every manufacturer had their own different connector, but now everyone has uses the likes of USB-C, meaning standard cables can be used across many more phones without an adapter.

Each cohort, database or dataset will have their own method or structure which they use to record and organise their data. This can make it difficult for researchers to look for or use information across multiple cohorts, as the same type of information might be recorded in different ways (such as different coding languages) or stored in different locations.

Using a Common Data Model (CDM) is one of the ways data researchers use to overcome this problem. CDMs are software tools that can help pool together data from various data-sources (such as the cohorts of CO-CONNECT’s data partners).  

In a sense, CDMs are third-party data translators, reading the different coding languages used in each cohort and re-writing their information in one standardised, easy to read language that is easier for researchers to search through.

Another method of visualising how CDMs work involves a bit of imagination.

Picture that you are on a website that sells cans of paint from various brands.

Now, for the sake of argument, also imagine that each brand organises their paint differently on their own websites. For example, some may first organise their paint by block colour, then shade. Others may organise by finish (e.g. matte, glossy) then colour, then shade. 

When deciding what shade a can of paint is, one brand may simply label their paints as being ‘light’ or ‘dark’, another may label their’s as being ‘very light’, ‘light’, ‘neutral’, ‘dark’ or ‘very dark’ and so on.

Furthermore, each brand will have different ways (or languages) for how they name their paints. One brand may be very direct, saying they sell light blue, very light blue and very dark blue. Another says they sell duck egg blue, sky blue and sea blue. Some may just say they sell paint colours called duck egg, sky and sea. Other brands may sell “azul” paints.

This is all to say that searching for information on the different blue paints across these imaginary websites would be incredibly inconvenient.

Finding out how many different cans of blue paint are available in shops near me? Or how many light blues are there with a matte finish? These types of questions would take you a long time.

Therefore, instead of manually sifting through all of these different websites, you go to one retailer that sells paint cans from multiple brands (our CDM). It re-organises all of the paint cans from across these different websites into one, single, standardise categorical system. One that is easy to navigate and search through with the help of filters.