Engaging patients in data-driven chronic pain research
Published on 17 May 2023
The occurrence of chronic pain is highly comorbid, presenting alongside other long-term conditions, including depression, heart disease and diabetes, negatively impacting the quality of life of those affected.
Chronic pain is one of the biggest, unmet global healthcare challenges, affecting approximately 1 in 5 people worldwide. Common causes of chronic pain include back pain - the number one cause of disability globally - as well as other musculoskeletal disorders such as arthritis, cancer, migraines, and fibromyalgia. However, there are numerous other triggers, and often an underlying diagnosis cannot be found. The occurrence of chronic pain is also highly comorbid, presenting alongside other long-term conditions, including depression, heart disease and diabetes, negatively impacting the quality of life of those affected.
Chronic pain can have a significant negative effect on many aspects of the individual’s everyday life, with their overall health, quality of life, working capabilities, and social life often being impacted. Research into its causes, effective management and potential treatments is of huge importance to those suffering with pain, as well as their families and friends. 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.
This is why engaging with people whose lives are impacted by pain will increase understanding and enhance research, ultimately leading to improved patient care and innovative healthcare solutions for those who need it.
Understanding the reality of living with pain can inform research
The realistic, everyday experience of living with pain is very personal and emotional for those affected. People can often feel isolated if their family, friends or medical professionals do not understand or believe the magnitude of their pain or the impact it has on their daily lives, functionality, mental health and relationships. Only the individuals affected and living with chronic pain can express their perspectives on the impact of pain and issues that are important to them. Therefore, it is crucial that the invaluable insight of people living with pain and their experiences are considered and prioritised throughout the creation and execution of pain research to understand and tackle what matters most to those it affects.
Pain research presents unique challenges and limitations
There has been thorough research involving extensive cohorts across the UK addressing chronic pain, its causes and possible treatment. However, data collected from pain-related projects and studies are often maintained in isolation due to previously having no nation-wide approach for collating and managing these data.
Additionally, as there are several standardised tools for assessing and measuring chronic pain, gathering and comparing these data can be challenging due to the variety of measures used across different studies. Therefore, with chronic pain data often existing in a variety of formats, this can make data linkage between these valuable datasets challenging for further understanding the underlying mechanisms of pain, developing healthcare solutions and reporting accurate prevalence.
The University of Dundee’s Health Informatics Centre is working in partnership with several other universities across the UK, the NHS, health charities, government, and industry groups to develop the Advanced Pain Discovery Platform (APDP) Pain Research Data Hub, known as Alleviate. Alleviate aims to make available data from chronic pain research undertaken across the UK, to maximise the value and use of this data. 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: an opportunity for patient engagement
The Alleviate Pain Data Hub team includes patient partners, Antony Chuter and Jillian Beggs, to ensure that the lived experience of pain is at the heart of all research decisions. They have been involved in shaping the design of the project throughout, from pre-funding to present.
Antony and Jillian are the Patient and Public Involvement and Engagement (PPIE) team leads and are embedded within the Alleviate research team, which ensures that the development of the project and the results shared are relevant and important to those living with pain. As partners in Alleviate, they also share ideas and opportunities with other pain-related research projects within the APDP, creating a community of patient voices relevant to pain research.
Alleviate will create a powerful resource that will be informed by what matters to people living with chronic pain. PPIE is integrated throughout the data hub development. We are creating a community of engaged people living with chronic pain to guide the project.
Join our community to receive updates about the project and opportunities to get involved.
Hear Antony, Patient and Public Involvement and Engagement (PPIE) lead for Alleviate, explain what Alleviate is and how it will improve the lives of people living with pain.
Involving patients to enhance pain research
PPIE projects such as Alleviate, are an invaluable opportunity to shape research and influence its dissemination and impact. Involving people who live with pain, and are equal partners within the research team, is of fundamental importance in the design and development of APDP pain research.
Actively involving partners who can share their lived experiences, needs, and challenges, ensures that their voice and perspectives are heard, valued, and taken on board. It can be a rewarding and productive process for both researchers and patient partners, working together to develop a better understanding of pain conditions and improve future management guidance and treatments.
More information on the Alleviate Pain Data Hub can be found on the Alleviate Pain Data Hub website, or by subscribing to our newsletter for regular updates.
Opportunities for conducting data-driven research
To find out more the Health Informatics Centre’s Data Safe Haven and about the opportunities for conducting data-driven research at the Health Informatics Centre, contact firstname.lastname@example.org
Get support for your precision medicine project or research
To find out more about how the University of Dundee can support your precision medicine project or research, contact email@example.com
Support organisations for people living with pain
Samaritans (free phone number: 116 123)