Patient and Public Involvement and Engagement
What is patient and Public Involvement and Engagement?
Involvement in research means it is being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.
Engagement is where information and knowledge about research is provided and disseminated to members of the public.
The Six UK Standards for Public Involvement
Individuals with lived experience of transplant have been involved as part of the research team from the start. Patients helped to design the study and are members of our trial management and governance committees. Working together we co-produced our patient information sheets and website. We are committed to inclusive research. Patient representatives help us engage and communicate with the public to maximise the impact of our research.-
Meet our patient representatives
Adam Alderson
Adam Alderson is a multi visceral 8 organ transplant recipient who was diagnosed with a rare form of abdominal cancer in 2013 and sent home on palliative care with just two years at best to live. But his determination and proactiveness lead him to seek a second opinion from Basingstoke hospital in Hampshire. Adam was referred to Oxford transplant center and put forward for a rare transplant procedure to remove 8 abdominal organs and a 10 kilo tumour. As part of that surgery Adam was given an abdominal wall graft that has helped detect early rejection episodes in his recovery and future life. It was just days after surgery when he noticed a slight rash on his abdominal wall graft and quickly had biopsies taken to determine if he was rejecting. With results showing Adam had low grade rejection he was treated with an intravenous medication to save his organs. Almost 9 years on Adam’s skin graft still gives him information about any possible issues related to his transplanted organs. Adam is an award winning keynote speaker who attends medical conferences and educational events and has a wealth of knowledge and experience in organ transplant. Adam is also our patient applicant for the Sentinel skin flap research study who is on hand to answer questions and guide patients through the medical jargon and any concerns. Adam is passionate about supporting patients and his involvement in the study brings the most important element of the research to us “ The Patient” ! He is also involved in a similar study for kidney transplant recipients in Dublin for Sentinel skin flap which gives him relatable experience in the study.
 Andy is Corporate Partnerships Coordinator for Action for Pulmonary Fibrosis. He has personal experience of life as a PF patient, having developed pulmonary fibrosis in his 40s and, following a 10 year journey, eventually receiving a life-saving double lung transplant in 2018. |
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Melinda
"The opportunity to potentially be able to see if your organ is rejecting just by looking at your arm is huge for those of us who are facing transplants. Not only because of the fact we could receive treatment earlier than if we didn’t have the patch but also for the peace of mind it would offer, being able to consult the skin patch whenever we feel under the weather. “I’m proud to have applied to be a part of the SENTINEL trial – if it does go on to be successful, it would be a momentous moment for transplant recipients, that wouldn’t be possible without donors. I would strongly urge everybody to make their wishes around donation known to their significant others" |
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