HIC case studies

CO-CONNECT (COvid - Curated and Open aNalysis aNd rEsearCh platform)

The aim of CO-CONNECT is to build the data infrastructure to ensure researchers have the necessary information to answer fundamental questions around how immunity may help prevent future spread of the virus in schools and workplaces, how best to treat it in hospitals, and generally how long immunity lasts.

The current pandemic has caused over a million deaths globally, severely strained health systems and damaged economies across the world. There is currently limited evidence that people who have recovered from COVID-19 and have antibodies are protected from a second infection and if so, how long that lasts.

Understanding who is immune, and to what level, is vital to protect vulnerable individuals, to safely scale back population-based interventions and for managing disease transmission.

CO-CONNECT seeks to:

• Provide a mechanism, via the HDR Gateway, to allow researchers to find what relevant datasets reside where and under what access conditions
• Configure an infrastructure which enables trustworthy, fast, de-identified, secure analysis of data from across multiple organisations
• Standardise antibody data collection across the UK
• Align with the National Core Studies programme
• Answer key questions about immunity to COVID-19 and the implications for patient outcomes

This is co-lead by University of Nottingham, Public Health England, University of Dundee and University of Edinburgh.

Find out more information on the CO-CONNECT website

Alleviate

Chronic pain is a major unmet global public health challenge.

It affects around 1 in 5 people, and causes more disability than any other condition, anywhere in the world.  Causes of chronic pain include arthritis, other musculoskeletal disorders, cancer, fibromyalgia and migraines, but there are numerous other triggers, and often an underlying diagnosis cannot be found. Chronic pain has a detrimental impact on an individual’s overall health, quality of life, ability to function and work, family life and even wider society. Chronic pain often occurs alongside other debilitating health conditions, such as depression, diabetes, and/or heart disease, increasing the negative impact on those affected. Research into causes and management is a priority for people living with pain, as well as their families, carers, and the communities they live in.

To help address this challenge and improve the lives of people affected by pain conditions, a better understanding of the mechanisms of pain and improved treatments are needed. Many research cohorts exist across the UK containing relevant pain-related data, but previously there has been no national approach to co-ordinating and managing these data.  This has resulted in limited ability to link data between the various research cohorts and national efforts collecting data at the point of care.

Alleviate is the APDP Pain Research Data Hub. Alleviate is transforming UK pain datasets to be Findable, Accessible, Interoperable and Reusable (FAIR) and is providing expert data engineering, to enhance responsible, timely and trustworthy analysis by researchers and innovators, with the aim to improve lives.

Alleviate forms part of an exciting larger £24M initiative to try and address the problem of chronic pain: The Advanced Pain Discovery Platform (APDP). The APDP is co-funded by MRC, Versus Arthritis and Eli Lily, and involves people living with chronic pain from the outset. The initial two phases of the Platform consist of Alleviate (the data hub) and four consortia, to be supplemented by several linked research grants. This innovative approach aims to break through the complexity of pain by delivering a consortium-based platform of national scale, generating discovery and early translational science.

PICTURES

PICTURES is investigating data science, engineering and cyber security to enhance the SMI. Supporting bigger datasets, smarter searches, more ambitious high-tech projects.

The PICTURES programme of work is about increasing the capabilities of Safe Havens to support emerging technologies such as artificial intelligence (AI) and new data types such as images, MRIs, CTs, Xrays etc in health data research. Safe Havens are a place where pseudonymised linked health data can be made available for approved research in a safe and secure manner. They enforce the “5 safes”:

1. safe projects = have the appropriate governance in place such as ethics and data controller approvals
2. safe people = researchers must have undertaken approved training in Information Governance
3. safe places = where data is held in a secure environment and accessed under restricted conditions for analyses
4. safe data = researchers are only given access to the minimum data required to answer their research question
5. safe outputs = outputs that have been assessed to ensure they don’t contain potentially identifiable or disclosive information

These measures are in place to maintain the trust of the public that their personal health data is used for the benefit of patients and / or the population as a whole.

Read about the project context, find out more project details, see progress on our timeline and read stories from the team on our blog page or follow us on Twitter.