Patient partners

Adeline Rosenberg 

As a patient and scientist living with Ehlers-Danlos syndrome (EDS) and other chronic health conditions, I am passionate about making medical science open and accessible to patient communities and the public. I work as a medical writer and science communicator in patient engagement, with a background in immunology. I also run a social media community page for EDS and was a health correspondent for a virtual disability magazine. More recently, I've been involved in researching and producing guidance for sharing medical research in plain language through my work with a collaboration called Open Pharma. Oxford University Hospitals and NDORMS have been instrumental in my health journey and professional development, and I'm excited to give back to the research community as a Patient Partner.

Jenny Gould

“A few years ago I had a number of orthopaedic operations at the NOC, all very successful,  for which I will be forever grateful.

I have a background in stress management and psychotherapy and although not medically trained have always been interested in matters medical. I’m particularly fascinated by the psychology of pain, especially how the language that’s  used by clinicians can impact pain and recovery. Almost 6 years ago I was asked to become a PPI member here in Oxford with the Musculo-Skeletal Trauma team, and although I knew very little about what to expect I decided to give it a go!  Since then I’ve been involved in many trials, including WHiTE (major hip fracture trial),  and  both upper and lower limb JLA PSPs (Priority Setting Partnerships), which asked patients, carers and clinicians for their top research questions in those areas.  I’m a member of the NDORMS PPI Committee and also the Oxford BRC Patient Panel.”

Judi Smith 

I have been involved in OPEN ARMS since spring 2021. This is my first step into Patient and Public Involvement research though I was previously on my GPs' patient participation group. I have a nursing background from many years ago and more recently have been working in schools supporting young people with dyslexia and other Specific Learning Difficulties. Musculoskeletal conditions feature strongly in our family including osteoarthritis and Ehlers Danlos Syndrome. Understanding how a condition affects a person and the family who care for them is vital so researchers can look into the aspects that matter most to them. I’m especially keen to reach patients who wouldn’t normally get involved in research and therefore whose voice is seldom heard.