Alleviate: a data hub for pain research 

Alleviate: pain data hub

Alleviate is helping researchers use health data to better understand chronic pain, pain that lasts for a long time, often for months or years. 

This project is bringing together pain data from different studies and health services, while keeping people’s information safe and private. This will help researchers find patterns, ask better questions and work towards better care for people living with pain. 

We are working with the NHS, Health Data Research UK, universities, people with lived experience of chronic pain, charities and industry partners. People with lived experience help guide the work so that it focuses on what matters to patients and the public. 

Research overview 

Across the UK, many research studies already collect information about pain. But these datasets are often kept in different places and in different formats. This makes it hard for researchers to join the information together or compare results. These datasets could include health records, survey answers, lifestyle information or genetic information linked to chronic pain. 

Alleviate will make UK pain data easier to find, understand and reuse for researchers. We will connect data safely so researchers can learn more from it and help turn data into knowledge that can improve the lives of people with chronic pain.  Alleviate is based at the University of Dundee. The project also includes clinical, research and technical experts from several universities and organisations including Health Data Research UK.  

What is the aim of this research? 

We want to create a trusted library of chronic pain data. Researchers will be able to search for datasets and ask to use them for approved studies. 

The data will be protected. Researchers will not see names or other details that directly identify people. This helps them use the data safely while protecting privacy. 

Why is this research important? 

Chronic pain is a major health problem. It can be difficult to treat, and it affects many parts of life. To improve care, researchers need to understand pain better. 

At the moment, researchers may not know what pain data already exists or where to find it. Alleviate will change this by making pain datasets easier to discover and use. 

This matters because better access to data can help researchers spot patterns, find people who may be suitable for clinical trials and test new ideas more quickly.  

We also want to clean and organise data once, then make it reusable for future approved research. This saves time and money and helps researchers check each other’s work. 

What are we doing? 

The project has five main work areas:  

1: Patient and public involvement 

People with lived experience of chronic pain and members of the public help shape Alleviate from the start. They advise the team, help share learning and make sure the project focuses on real needs. 

2: Programme management and engagement 

The team manages the project day to day and works with the groups who need to know about it. This includes people with chronic pain, researchers, the NHS, charities, funders and industry partners. We want the hub to be known, used and useful beyond the first funding period. 

3: Adding data to the hub 

Once the right approvals are in place we will add pain datasets to the hub. This includes checking what the data contains, describing it clearly and preparing it so researchers can search and use it safely.  

4: Connecting data safely 

Some data may be stored in one central place. Other data may stay where it is and be searched safely from a distance.  It means researchers can learn from data without always moving it. This work package will manage make decisions about the best tools to use.  

5: Secure research environment and infrastructure 

The project uses a secure space called a trusted research environment. This is a protected computer system where approved researchers can study sensitive health data without downloading it onto their own devices. This work package will ensure that this environment is set up to handle all the different types of pain data.  

What have we learned so far? 

So far, Alleviate has added 11 completed datasets to the hub and has also made 21 datasets easier to find through the Health Data Research UK catalogue. Together, these datasets include more than 387,000 records about genetics, health, lifestyle and medicine, all linked by a shared focus on chronic pain. 

The Universities of Dundee and Nottingham have worked together on two tools called Carrot CDM and Carrot Mapper which help organise health data. During Alleviate, the teams improved the tools so they can handle larger and more complex pain datasets. 

These improvements are already helping other projects, including dementia research and secure data work across the UK. Because the tools are open source, others can use them without paying for expensive commercial software. 

What happens next? 

The Alleviate team will keep applying for funding so the work can continue and grow. 

The hub is hosted by the Health Informatics Centre at the University of Dundee. The centre has supported health data research for more than 20 years, so Alleviate can build on strong experience and continue beyond the first project funding. 

OMOP data service 

One important success is the team’s growing skill in the Observational Medical Outcomes Partnership (OMOP) data model, which is designed to standardise data to enable it to be studied more efficiently. Since 2023, the Health Informatics Centre has offered an OMOP data service. This has already supported new funding from Health Data Research UK, Public Health Scotland, the Dementia Trials Accelerator, Innovate UK and the NHS Secure Data Environment Network. 

This work is important in the UK and internationally because it helps researchers find and study groups of people across different datasets more quickly and safely. 

Meet the team 

Dr Christian Cole 

Dr Christian Cole is a health data researcher at the University of Dundee and co-director of the Health Informatics Centre. Health informatics means using health information and technology to support research and care. 

He works on tools and secure systems that help researchers study real-world health data. Real-world data means information collected during everyday health care, not just in a research lab. 

Dr Cole directs the Alleviate Pain Data Hub. His work helps make pain data easier to find, safer to use and more useful for research into chronic pain.