Living with pain: how can we connect the dots in existing data?

We’re looking into how data science could help address important gaps in the field of pain research. Specifically, we’re thinking about running a pain data prize, building on our existing data prize programme and pain discovery research, and we’ve commissioned Science Practice to scope it out.

Read on to find out why we care about this space, what a data prize could help achieve, and how you can send suggestions or ideas our way.

Pain is an urgent health and equity issue

Pain is a leading cause of disability worldwide. According to some estimates, 1 in 4 adults experience chronic pain that substantially interferes with their daily activities. For anyone new to this topic, chronic pain is any type of pain which persists past the body’s typical healing time and stops serving an obviously helpful function.

The effects of pain and access to treatment are equity issues. Pain disproportionately affects marginalised populations, including women, older people, and people from lower socioeconomic backgrounds. We also know there is racial bias in pain treatment, with one study finding Black patients in the US were about half as likely to be prescribed opioid medicines as white patients with the same conditions. Access to pain management varies globally — over 80% of the world’s population, mostly based in low- and middle-income countries, have little to no access to treatment.

While pain is an urgent health and socioeconomic issue, it’s challenging to research. Because chronic pain is frequently a symptom of other physical and mental health conditions, communities researching and treating pain in these different clinical contexts often don’t speak to each other. And, while a lot of research focuses on the body’s pain mechanisms, less attention has been paid to the brain’s role in how we perceive pain, and how these two mechanisms interact with each other. Current treatments rarely alleviate 100% of pain, and we still don’t know which treatments work for whom and why.

We want to know if a data prize could help address these challenges, while giving people with lived experience of pain a voice in the development of software tools used in research.

“The pain of it all,” painting by Michele Angelo Petrone. Attribution 4.0 International (CC BY 4.0) Chronic pain is often a symptom of other physical or mental health conditions, including cancer, as illustrated in Michele’s work.

Why we’re considering a data prize approach

A data prize is an open competition where participants use existing data to solve a societal problem. Wellcome is already running a data prize in mental health which launches this spring, where participants will build digital tools that will be foundational to future research in this space.

There are three important characteristics of a Wellcome Data Prize that together could bring about a step change in pain research:

1. Going beyond the usual research communities. Most health research happens within established communities and disciplines. With a data prize, we would aim to build a multidisciplinary pain research community, including neuroscientists, mental health professionals, clinicians, and data scientists. The prize could encourage them to share their perspectives and design innovative approaches to pain research.

2. Putting co-creativity at the heart of research. We value lived experience and would strive to ensure that people affected by pain have a say in the way research is conducted. Given that pain disproportionately affects marginalised groups, the prize would also focus on ensuring future technologies or digital tools in this space can help reduce health disparities.

3. Raising awareness around the health challenge and inspiring solutions. Pain is sometimes referred to as a silent epidemic. We want to draw attention to the ways it impacts people’s lives and the gaps in existing research throughout this project. We will share the outcomes of this scoping project and openly discuss any challenges we encounter.

This scoping is a joint initiative between two teams at Wellcome: Data for Science and Health and Discovery Research. We are pleased to be partnering with Science Practice to investigate potential data sources and how these could be used to help answer research questions prioritised by people working in the field and/or living with pain.

What comes next?

Over the next two months during our preliminary scoping phase, we will work with Science Practice to explore the possibility of running a Wellcome Data Prize in Pain. The prize’s feasibility will depend on the accessibility and diversity of existing datasets, the potential impact a data prize could have on pain research, and the views of people researching and/or living with pain. In particular, we are looking for people and networks who have information on the challenges of treating and managing pain and who are not yet connected with research efforts.

If you are interested in pain research or know of any relevant data sources, please get in touch by emailing projects@science-practice.com!