Friday 19 May 2023 saw the first OPEN ARMS open day at the Botnar Institute for Musculoskeletal Sciences. 25 members of the public and several researchers attended. Judi (one of the OPEN ARMS committee members) and Patient and Public Involvement Coordinator Louise Hailey tell us more.
Professor Laura Coates introduced the day, explaining that OPEN ARMS is “a group of patients, family members and members of the public who work with medical researchers at the University of Oxford”.
She gave the example of a project her own team had worked on with several PPI members. This was looking at how psoriatic arthritis affects different areas of life and designing a website called informatree to share this information. The patients suggested extra topics for the site and that they included quotes from patients as to how they are affected by the condition. This would help new patients feel less isolated.
Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences (NDORMS)
Professor Jonny Rees, who is Head of Department, gave us a whistle stop tour of the history and scope of NDORMS.
Jonny said, “PPI members are essential at all stages of our research process.”
He introduced our first two speakers Professor Chris Buckley (Inflammation Across Tissues) and Maria Sanchez (Musculoskeletal). They spoke to us about the areas of research their departments work on with funding from the Oxford Biomedical Research Centre (BRC).
BRC Inflammation Across Tissues Theme
Professor Chris Buckley shared how a comment from a patient was key in the development of this relatively new way of working. The patient said, “if inflammation is so common, why don’t you study it all together?” With this in mind, the Inflammation Across Tissues group has brought together those researching into conditions that cause inflammation in the joints, guts and skin. They can then carry out trials of a drug to find out where it works most effectively. Chris also explained how we don’t yet know all the types of cells that make up the tissues in the human body and that it is vital we find this out – that’s why this area of work is called’ “Discovery Science”. This video explains why getting involved in this type of research is so important.
BRC Musculoskeletal Theme
Maria also spoke of the importance of researchers from different backgrounds coming together to widen our understanding of musculoskeletal conditions. She listed the 5 key areas of research in their department.
The focus of Maria's work is, “Which factors in mid-life can predict frailty in later life?” She gathered eight PPI members to help in the initial stages of the research and also spoke at a Meet the Researcher meeting. During that meeting the audience were invited to take part in a poll, the results were really helpful for her work.
OPEN ARMS Patient Partners
© ShutterstockWe heard from two members of the OPEN ARMS committee – Barbara and Judi. Barbara was introduced to PPI by her consultant and Judi saw an advert for the first Meet the Researcher meeting. Barbara has a background in advertising and psychology and Judi in healthcare and education, and they have found these open up different opportunities to help in the research world. They shared some of the ways people can get involved from a short task like commenting on how readable a lay summary is to being part of a research team from the grant application right through to sharing the results. There’s room for everyone – if you are interested please get in touch with Louise.
Meet the Researcher
A ‘Meet the Researcher’ presentation from Professor Kassim Javaid was next. He shared his work on osteoporosis – weak bones, something which causes problems in older age as they break more easily.
Kassim is involved in the ADOPT study (AI-enabled Detection of OsteoPorosis for Treatment) which takes place across several universities. He explained that many people have CT scans to check for signs of disease in the lungs but these scans can also be looked at later to see if there is a problem with the spine. They are using artificial intelligence to pick up a small fracture in the spine. This may not be causing any problems now but the patient would benefit from treatment to prevent problems later on. This reduces the risk of more fractures and pain for the patient and saves the NHS money on the way. Patients have been involved in the project at every stage of the project.
The other project Kassim spoke about is RUDY (Rare Undiagnosed Diseases Study). They have a fascinating website which includes a page on how and why patients have got involved.
Ida Parisi from the Kennedy Histology team wowed us with the beautiful Bioart pictures they have produced.
Q&A session and Lab tours
The open day ended with a Q&A session and tour of the Botnar laboratories.
Thank you to everyone who joined what we hope will now become an annual event in our calendar!