Cookies on this website
We use cookies to ensure that we give you the best experience on our website. If you click 'Continue' we'll assume that you are happy to receive all cookies and you won't see this message again. Click 'Find out more' for information on how to change your cookie settings.

On launching the new OPEN ARMS PPI group in Oxford, Dr. Laura Coates explored the patient and public involvement (PPI) models of three academic centres in the UK to show how it benefits researchers, clinicians, and patients alike.

Laura Coates

It has been shown beyond doubt that involving patients and the public in research provides long term benefits, promoting higher standards of research and improved patient outcomes. Patient participation, and patient engagement are important facets of patient-centred research. Patient involvement (PPI), as defined by INVOLVE, a national advisory group funded by the National Institute for Health Research (NIHR), is 'research being carried out 'with' or 'by' members of the public rather than 'to'.

It's this involvement that has positively influenced the research process; from the initial stages of research with the development of research questions, research design and delivery, data collection and analysis, through to dissemination.

PPI is particularly crucial in rheumatology research, as most rheumatic and musculoskeletal conditions are life-long and life-altering. So how should PPI be undertaken to ensure consistency, quality, and represent patients from a range of demographics to ensure that the research represents the wider community?

In 2020, the Oxford Patient Engagement Network in Arthritis and Musculoskeletal Science (OPEN ARMS) group was launched at NDORMS. Leading the launch, Dr Laura Coates drew on the experience of other established groups in the UK.

NIHR Leeds Biomedical Research Centre

The NIHR Leeds Biomedical Research Centre has over 250 people comprising patients, carers, and members of the public. Alongside bi-monthly meetings, task and finish working groups, the group supports activities to involve under-represented groups and promote diversity within its patient community.

University College London (UCL)

UCL has developed a model of a core patient and public involvement cohort representing various rheumatic conditions who will provide input during virtual meetings, with discussion around research project development and priority setting. Patient-facing literature and other research documentation is written in language that is understandable to the general public.

Oxford Biomedical Research Centre

The Oxford Biomedical Research Centre runs a large and successful advisory group overseeing patient and public involvement across all specialities. OPEN ARMS launched within the musculoskeletal theme aiming to focus on diversity and gain representation from previously harder to reach groups through carefully designed recruitment materials and extensive outreach to different community groups.

The groups faced different challenges through the Covid pandemic. The move to virtual platforms may have had an adverse impact on participation from under-represented groups with lower technology proficiency. For others, online meetings may have appealed to the younger demographics.

The challenge will be to adapt activities to remain inclusive to all patient communities while continuing to apply innovative thinking to develop dynamic, impactful collaborations with patients that also benefit researchers and clinicians.

Read the full paper here.

Similar stories

Professor Chris Buckley has joined the Kennedy Institute as Director of Clinical Research

Moving to the University of Oxford with the Arthritis Therapy Acceleration Programme (A-TAP) will help accelerate the discovery of new treatments for inflammatory diseases.

Behind enemy lines: research finds a new ally in the fight against cardiovascular disease hidden within the vessel wall itself

A new study reveals the existence of a powerful ally in the fight against cardiovascular disease, a protective subset of vascular macrophages expressing the C-type lectin receptor CLEC4A2, a molecule which fosters “good” macrophage behaviour within the vessel wall.

More effective treatment found for patients hospitalised with COVID-19 pneumonia

A proof-of-concept trial involving Oxford researchers has identified a drug that may benefit some patients hospitalised with COVID-19 pneumonia.

NDORMS researchers honoured in the Recognition Of Distinction Scheme 2021

Sally Hopewell and John Christianson have been awarded the title of ‘Full Professor’ in the University of Oxford’s Recognition Of Distinction Scheme 2021.

New Oxford-Zeiss Centre of Excellence opens at the University of Oxford

The Kennedy Institute for Rheumatology and the Institute of Developmental and Regenerative Medicine announce the launch of the Oxford-Zeiss Centre of Excellence, providing state-of-the-art imaging technologies to lead future discoveries in global health and disease.

HOPE-c opens up for recruitment

Researchers in the Centre for OA Pathogenesis Versus Arthritis at the Kennedy Institute of Rheumatology and Imperial College London are looking to recruit adults with painful hand osteoarthritis for an observational study to help uncover why people living with the condition experience different patterns of pain.