Digital Geniuses

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In this episode of Inflammatory!, Debbie and Katy firstly reflect on the first Inflammatory Arthritis UK virtual community event, where they connected with the IA community and received helpful feedback on future topics. Katy shares touching moments of how the podcast has helped others, including family members who have a better understand life with IA.

They then explore the vital role of research in improving care for people with inflammatory arthritis (IA). Katy shares her experiences participating in a range of studies, from surveys and focus groups to serving on research committees. The conversation highlights the importance of Public and Patient Involvement and Engagement (PPIE), showing how those with lived experience are essential in shaping research that truly matters.

They discuss being involved in steering groups and helping to design digital health apps, while also reflecting on the real-world challenges of integrating new technology into clinical care, illustrated with a humorous story about handwritten notes on a napkin after a system failure.

The episode also explores exciting areas of current research, including genetics, machine learning, and the MAPJAGstudy, which investigates what’s happening inside the joints by analysing biopsy samples from joint injections. Debbie and Katy emphasise how digital innovation and AI could transform diagnosis and treatment, while also urging caution around data privacy and the need for ethical use.

A key theme is ensuring research remains inclusive and accessible—including fair compensation that doesn’t impact benefits. Finally, the hosts encourage listeners to find ways to get involved in research, whether through clinical studies, reviewing patient information, or sharing their voices to guide future priorities.

Resources:

· Research page: https://inflammatoryarthritis.org/research/

· Link to Map-JAG Study here

· Tax implications from HMRC

“There will be no tax or NIC liability arising on the individual if the sums received do no more than reimburse the individual’s reasonable costs of participating in the trial or research, including costs of travel and subsistence. However, should the sums paid exceed those reasonable expenses then the excess may fall to be chargeable to tax as Miscellaneous Income, potentially giving rise to personal tax liabilities of the individuals which should be notified to the HMRC under Self Assessment”.

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