Projects per year
Abstract
Aim
Alleviate is the data Hub for the Advanced Pain Discovery Platform (APDP). Alleviate’s aim is to break down data silos and provide secure access to pain data. Our aim was for Patient and Public Involvement and Engagement (PPIE) to be embedded from inception to ensure patients with lived experience of pain are central to the development of the Hub.
Methods
The Alleviate PPIE strategy was developed with patient partners to be open and inclusive. The lead patient partners are co-investigators on Alleviate and have been involved since the project’s design phase. The group consists of two lay leads and five people with lived experience of chronic pain who are actively involved in all Hub meetings and development activities.
The PPIE group’s sharing of their experiences living with chronic pain motivate the Alleviate team to make the Hub successful. These lived experiences provide an enriched perspective for the team which continually re-adjusts the way information is communicated around the Hub as they feel it is important to provide easily understandable information.
The Alleviate Pain Community is an online community of over 250 of those living with long-term pain in the UK. They receive Hub newsletters covering progress and we’ve hosted open meetings raising awareness of what the Hub does and how it can provide public and research benefits.
Lead patient partners train the Alleviate team and APDP members on PPIE in pain research. To date, this has involved sharing a personal journey of pain, its daily impact, the importance of empathy and an understanding of pain, as well as a session on how to support, empower and grow PPIE in pain research.
Results
Embedding the PPIE team within the Hub core team allows Alleviate to stay on track and tighten external communications. It allows the Hub team to gain richer opinions on activities to ensure they are relevant to patients and the wider pain community. The PPIE team’s ability to effectively communicate their lived experience with Chronic pain has highlighted the benefit of our work and raised the profile of our Hub. The PPIE strategy makes Alleviate an engaging environment for PWLE, encouraging them to become, and remain involved.
Conclusions
Alleviate’s embedded PPIE team ensures that diverse voices from those living with long-term pain are heard across the entire project during all meetings and communications. This is invaluable to ensure the needs of the chronic pain community are heard where they are most needed.
Alleviate is the data Hub for the Advanced Pain Discovery Platform (APDP). Alleviate’s aim is to break down data silos and provide secure access to pain data. Our aim was for Patient and Public Involvement and Engagement (PPIE) to be embedded from inception to ensure patients with lived experience of pain are central to the development of the Hub.
Methods
The Alleviate PPIE strategy was developed with patient partners to be open and inclusive. The lead patient partners are co-investigators on Alleviate and have been involved since the project’s design phase. The group consists of two lay leads and five people with lived experience of chronic pain who are actively involved in all Hub meetings and development activities.
The PPIE group’s sharing of their experiences living with chronic pain motivate the Alleviate team to make the Hub successful. These lived experiences provide an enriched perspective for the team which continually re-adjusts the way information is communicated around the Hub as they feel it is important to provide easily understandable information.
The Alleviate Pain Community is an online community of over 250 of those living with long-term pain in the UK. They receive Hub newsletters covering progress and we’ve hosted open meetings raising awareness of what the Hub does and how it can provide public and research benefits.
Lead patient partners train the Alleviate team and APDP members on PPIE in pain research. To date, this has involved sharing a personal journey of pain, its daily impact, the importance of empathy and an understanding of pain, as well as a session on how to support, empower and grow PPIE in pain research.
Results
Embedding the PPIE team within the Hub core team allows Alleviate to stay on track and tighten external communications. It allows the Hub team to gain richer opinions on activities to ensure they are relevant to patients and the wider pain community. The PPIE team’s ability to effectively communicate their lived experience with Chronic pain has highlighted the benefit of our work and raised the profile of our Hub. The PPIE strategy makes Alleviate an engaging environment for PWLE, encouraging them to become, and remain involved.
Conclusions
Alleviate’s embedded PPIE team ensures that diverse voices from those living with long-term pain are heard across the entire project during all meetings and communications. This is invaluable to ensure the needs of the chronic pain community are heard where they are most needed.
| Original language | English |
|---|---|
| Publication status | Published - 31 Oct 2023 |
| Event | Scotland's Health Research and Innovation Conference - Queen Elizabeth University Hospital, Glasgow Duration: 31 Oct 2023 → 31 Oct 2023 https://www.nhsresearchscotland.org.uk/conference-2023 |
Conference
| Conference | Scotland's Health Research and Innovation Conference |
|---|---|
| City | Glasgow |
| Period | 31/10/23 → 31/10/23 |
| Internet address |
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Alleviate: Hub for Pain (Pain Research Data Hub - UKRI and Versus Arthritis Strategic Priority Fund (SPF) Advanced Pain Discovery Platform) (Joint with University of Oxford, University of Bath, King's College London, Imperial College London and University of Nottingham)
Cole, C. (Investigator), Colvin, L. (Investigator), Hales, T. (Investigator), Jefferson, E. (Investigator), Smith, B. (Investigator) & Walls, R. (Investigator)
1/07/21 → 31/12/24
Project: Research