The COVID-Curated and Open aNalysis aNd rEsearCh plaTform (otherwise known as CO-CONNECT) is a UK wide research programme supporting researchers to find and access COVID-19 data at pace whilst ensuring people’s information is kept private and secure. CO-CONNECT has patient involvement at the heart of its design. Our team of public members are directly involved in the project to make sure that the public’s perspective is heard and acted upon at every stage.
In collaboration with Health Data Research UK, CO-CONNECT is streamlining processes across the 3 stages of a research project.
The first stage of a research project is to find the data available to answer a specific research question.
Across the UK, each time someone takes part in research, visits their GP or hospital, or takes a blood test, data from these events is securely held by the organisation that collected it.
As the data is collected in many places with many different processes, it’s difficult and complex for researchers and public health groups to find it. This is something we need to address, especially when lots of high-quality data is needed quickly and efficiently to make decisions, like during the COVID-19 pandemic.
CO-CONNECT has researched methods to help researchers find the data they need faster. This research has delivered the HDR UK Cohort Discovery Search tool within the Health Data Research Innovation Gateway website. The tool enables researchers to determine how many people meet their research criteria within the various datasets across the UK. For example, researchers could ask “How many people in each dataset have had a PCR test which was positive and were under the age of 40.”
The Gateway website only processes the questions asked by the researcher using anonymous data and provides summary level anonymous answers to the questions it receives, so it will never find out a person’s identity. The tool means researchers can quickly find out a summary of what data is available without directly contacting individual organisations that hold data. People’s data is kept safe and secure as the underpinning data doesn’t move from the organisations who hold it.
To find out more details about how CO-CONNECT is helping researchers to find data and how we protect patient confidentiality please visit our CO-CONNECT Finding Data page.
In the second stage, if researchers find datasets they wish to analyse, they must obtain formal approvals from every data partner to carry out their research on the data. A data partner is an organisation who holds data and is collaborating with the CO-CONNECT programme.
The Gateway streamlines this process by providing contact information for each dataset and a standardised application form for researchers to obtain approvals from data partners that have adopted the process. CO-CONNECT helped shape the requirements and test the functionality to make sure it works for everyone involved.
The third stage is for researchers to analyse data. CO-CONNECT is supporting two methods for researchers to analyse data:
In collaboration with Data Partners, CO-CONNECT is researching federated analysis, where the data remains within the Data Partner’s secure environment, but questions are sent to the data and summary anonymous results returned. Building upon the functionality of the method to find data using the Cohort Discovery Search Tool, this method would enable researchers to do complex trend analysis rather than having access to simple counts.
For example, the question could be “How does the number of people with a positive PCR test change with age”. The trend returned would return the number of people with a positive PCR test grouped by age range.
Data Partners must approve all federated analysis research projects before any analysis can take place.
Another method for analysing data is for detailed data to be accessed and analysed within a Trusted Research Environment. This is a secure IT system that researchers can remotely connect to and ask research questions on de-identified data. The data cannot be copied or removed from the Trusted Research Environment and researchers can only export the answers from their analysis such as a graph.
CO-CONNECT is improving this third stage by enabling data partners to transform data into a clean, standard format. This standard format reduces the effort on each research project, supporting rapid research to help the government and policymakers make decisions.
CO-CONNECT is also researching a new capability in collaboration with data partners to provide data in a way that enables researchers to understand which data is from the same individual across different data partners – without compromising patient identity.
For example, if successful, COVID-19 results from a test centre could then be linked to hospital records and pharmacies’ prescriptions. By developing methods to link these data, researchers can assess if patients with different existing health conditions are more or less susceptible to COVID-19, impacting healthcare treatments.
To find out more details about how CO-CONNECT is helping researchers to access and analyse data and how we protect patient confidentiality please visit our CO-CONNECT Accessing and Analysing Data page.
Delivered in partnership with Health Data Research UK via the Data and Connectivity National Core Study and over 24 partners from across the UK. CO-CONNECT is funded by the Medical Research Council, part of UK Research and Innovation, and the National Institute of Health Research, part of the Department of Health & Social Care.
For further technical information behind the CO-CONNECT project, please review our technical documentation available here.