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How to Ensure Meaningful Patient and Public Involvement (PPI): Learnings and Impact from the UK-wide Advanced Pain Discovery Platform's PAINSTORM Consortium
Topical Workshop
Meaningful Patient and Public Involvement in neuropathic pain research is essential for developing studies that address important issues for the pain community and facilitating people living with neuropathic pain to take part in research. The Advanced Pain Discovery Platform (APDP) is a £24 million, 5-year ground-breaking UK-wide initiative to advance the understanding of aetiology and treatment of pain. This session will present PAINSTORM, a consortium within APDP focused on neuropathic pain, as a case study to share experiences and good practice in PPI. This will highlight experiences of embedding meaningful involvement throughout PAINSTORM and the impact patient partners have had on the scientific direction, design and thinking within the PAINSTORM team, including public engagement strategy. Patient partners have been embedded throughout the research cycle in PAINSTORM - including research conception, development, methodology design, as well as dissemination and engagement. We will introduce the APDP and the unique approach we are taking to connect patient partners across the platform. We will use interactive approaches to determine the PPI knowledge and experiences of the audience, discuss what barriers exist to PPI and what resources are needed to promote and facilitate meaningful PPI in neuropathic pain research.