Alleviate Pain Data Hub

The Alleviate model of PPI is to not assume any specialist knowledge in data or research, but to accept people living with pain, including people with arthritis (PwA), as experts in their own right, and to engage this expertise fully throughout the project.

Alleviate’s two Lived Experience Leads were equal co-applicants on the Advanced Pain Discovery Platform (APDP) grant that funds the project. The PPI Advisory Group brings together patients from a range of backgrounds, with different experiences of pain, including PwA. The Lived Experience Leads recruited this group, using social media, online platforms and relevant charities.  They get to know members, explore their access needs and explain the project clearly, taking an individualised approach to supporting participation, to remove any potential barriers. 

Alleviate has also developed an online community, with over 300 members, with different options for involvement levels.  This community acts as a wider sounding board for ideas and provides diverse perspectives on the reality of living with pain.

The Advisory Group has led on engagement and communications, including opportunities to present externally, and co-produced all documentation to be used within the project.

Chronic pain is one of the greatest health problems. Many research groups across the UK collect and analyse relevant pain-related data, but often with a lack of coordination. This restricts our ability to link data between the various research groups, and to combine this with clinical data collected at the point of care.

Alleviate is the Advanced Pain Discovery Platform (APDP) Data Hub. Its role is to create an online, safe platform for researchers to access pain-related data, working with Health Data Research UK (HDR UK) to better tackle the challenges in understanding the complexity and unpredictability of pain. This will lead towards new and improved prevention and treatments across diverse chronic and debilitating pain conditions.

People with lived experience of pain, including PwA, have been, and continue to be, involved at every stage of the project.

Our Lived Experience Leads used their communities and networks to recruit a wider group of people. The Leads offer support to the wider group on an ongoing basis.

The two Lived Experience Leads offer support and mentoring to other members of the Advisory Group. Accessibility issues around the work and any meetings are discussed by the Group, with adjustments made to maximise each individual’s ability to participate.  A PPIE Coordinator works with the Leads and the Group to ensure that needs are met and opportunities to contribute to the work of the project are structured in a way that is accessible.

People living with pain are involved at every level in decision making at every stage through the whole project. Members of the Group have:

-         Recorded Vlogs as a part of Pain Awareness Month, telling their own story about pain (Pain Awareness Month: Kausar's Story (youtube.com);

-         Researchers have revised their language in to lay terms on the advice of the Advisory Group;

-         Written blogs to give their perspective on participating in events (Patient Partner reflections on the Scottish Research and Innovation Conference - Alleviate Pain Data Hub);

-         Spoken at Conferences and Webinars, communicating Alleviate’s work (Antony: Making my voice heard to support the millions of people living with chronic pain - HDR UK) ;

-         Led sessions at Alleviate’s Conference (Successful Alleviate and CAPE Conference 2024) ;

-         Regularly chair project wide meetings and attend, and contribute, to the Steering Committee

-         Directed the development of the UK National Pain Survey;

-         Contributed to priority setting in the funding application for the next phase of Alleviate’s work.

The embedding of PPI throughout the project has led to partnership working between the research team and people with lived experience.  Rather than influence individual decisions, this approach has shifted perceptions and has altered the lens through which all research is planned and conducted. Personal reflections on living with pain have helped build public and team understanding of pain. The approach acknowledges the challenges that those living with pain overcome on a daily basis. This in turn makes Alleviate more relevant, greatly enhances its potential and maximises wider community benefits.

As a Group, we would like more opportunities to meet face to face, as the development of strong relationships are key to ensuring the effective involvement of people with lived experience in research.

Involving people with lived experience in research has to involve real work and be respectful and genuine. People’s time and expenses should be fully accounted for in funding applications. Take the time to build relationships and trust.

People who are living with pain having often had negative experiences of not being listened to or believed. We have worked as a team to build genuine relationships of trust and mutual respect to ensure people with lived experience feel able to work as full members of the project.