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Public and Patient Involvement

The Institute of Ageing and Chronic Disease is committed to working in partnership with the public to shape our research and give people an opportunity to directly interact with, and learn about our research.

The Institute of Ageing and Chronic Disease is proud to support a range of public outreach and engagement activities. We believe that ensuring that our research is accessible to those outside of our Institute is beneficial, not just for those able to learn about our work, but in guiding the focus of our research, ensuring that we are constantly referencing real-world problems when applying strategies and exploring new avenues of research.

To do this we explore a range of opportunities allowing us to engage with the public and those who may be affected by our research, as well as schools and colleges, helping to ensure that the next generation of scientists has an opportunity to explore the possibilities available to them.

 


 

Patient Involvement Panel

The Institute of Ageing and Chronic Disease Musculoskeletal Biology Patient Involvement Panel (PIP) was established in 2017. Chaired by Dr Helen Wright, the panel serves as a resource for our researchers to engage directly with patients who may be living with the conditions which they are investigating, helping to shape the direction of our research strategy and ensure that they remain focused on delivering research with a real-world benefit. The events also afford patients the opportunity to hear presentations from our researchers, as well as invited external speakers from clinical and scientific backgrounds, giving them an insight into the most up to date advancements in the field of musculoskeletal ageing and chronic disease

Meetings are held 3 times a year with the aim of:

  • Providing a new pair of eyes for research ideas
  • Helping researchers to write lay summaries
  • Reviewing applications to funders that require public involvement
  • Helping researchers present their research in an easy to understand manner

Our panel is made up of around 10 patient insight partners who together have personal or family experience of a wide range of musculoskeletal conditions, including: Osteoarthritis, Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, Vasculitis, Systemic Lupus, Erythematosus Behçets Disease, and Myositis Fibromyalgia.

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Patient Testimonials

Below is a series of testimonials given to us by the patients who regularly attend our Involvement Panels:

 

Ann, patient partner

“I would just like to say how grateful I am to you, and the team for giving me the opportunity to be able to be part of the patient panel. I have really learnt a lot and really enjoyed being part of it all. “

 

Lisa, patient partner

“My Mum has rheumatoid arthritis and I developed psoriatic arthritis in my early 40s. I am very grateful for the 12 month clinical trial I went  on for a new Biological drug. It was very effective and I have received this treatment ever since. I feel like it has given me my life back, as previous treatments gave me very unpleasant side-effects. I love hearing about new research projects and hope that my input in the Patient Involvement Panel helps in the success of obtaining grants to further the excellent research that goes on here.”

 

Mike, patient partner

“By being part of the patient involvement group it has given me the means to demystify and debunk some of the sensational headlines seen in some of the national press. It is encouraging to view some of the innovative research proposals but it has also clearly shown the inadequate funding for which each proposal has to vie.”

 

Irene, patient partner

“As a person with rheumatoid arthritis I have met with research groups specifically interested in me and how various drugs have impacted on me. Joining the Patient Involvement Panel has widened my insight into how much research goes on in all areas of debilitating and chronic illnesses. It is an opportunity to give something back to those working so hard on our behalf.”