Dr Noémi Roy (Radcliffe Department of Medicine) received funding to develop a project aimed to increase understanding, reduce stigma, and improve the quality of life of people living with sickle cell disease. People who live with Sickle cell disease (SCD) are almost exclusively of Black African and Afro-Caribbean origin. This genetically inherited condition puts people at risk of childhood strokes, severe painful attacks, kidney failure and early death. To address the difficult topic of racism in a safe and collaborative environment, we propose to carry out focus groups including members of the healthcare team, people living with sickle cell disease, members of the public of Black African and Afro-Caribbean ethnic origin, and an impartial professional moderator. These will explore attitudes and thoughts about whether and how racism exists in our service, how this impacts the health of the patients, their ability to access services and seek support and advice, how this harms the long term relationship between the health care team and the patients and the general public, and what interventions could be put in place to reduce this.
Professor Katja Wiech (Nuffield Department of Clinical Neurosciences) received funding to develop a website that showcases findings from brain imaging studies to explain the neural basis of pain perception and psychological pain modulation in the brain in an accessible manner. The website will be launched with a virtual public event including a presentation and tour of the website followed by a Q&A session.
Dr Hannah McGivern (Nuffield Department of Surgical Sciences) received funding to produce a video which will use a combination of interviews with clinicians and researchers and a short animation to illustrate the journey of a donated organ and explain how donations of organs and organ tissue can have a significant impact on the advancement of transplant medicine, help inform clinical practice and save more lives. The video will raise awareness of the importance of organ donation and will be a useful development tool for front-line specialist nurses in organ donation.
Dr Jamie Hartmann-Boyce and Dr Elizabeth Morris (Nuffield Department of Primary Care Health Sciences) received funding to create a physical art installation and digital interactive quilt of artwork to capture individual experiences of living through the pandemic with diabetes. Artwork will be displayed in the Oxford Centre for Diabetes, Endocrinology and Metabolism, to mark the experiences of people with diabetes during this time, and as an ongoing source for reflection for patients, the public and healthcare professionals.
Professor Chrystalina Antoniades and Jacqueline Pumphrey (Nuffield Department of Clinical Neurosciences) received funding for their project Picturing Parkinson’s, which brings together artists, patients and neuroscientists to bridge the gap between objective research into Parkinson’s Disease and people’s lived experience of the condition. We are creating the time and space for researchers to interact with patients in a different way from that which is possible in the clinic. Our project is a two-way communication in which art helps us to learn more about the lived experience of Parkinson’s, and the patients learn more about the research that we are doing as well as helping us to improve our methods. It is part of a continuing collaboration with the Ashmolean Museum and GLAM.
Dr Carlo Perrone (Nuffield Department of Medicine) received funding for a scrub typhus engagement project. Despite it being the leading treatable cause of undifferentiated febrile illness in Chiangrai province, most of the general public does not know of the existence of scrub typhus let alone how to prevent it, recognize it and treat it. To bridge this gap, Chiangrai Clinical Research Unit (CCRU) partnered with Chiangrai Prachanukroh provincial hospital and conducted engagement activities with primary care unit staff and village health volunteers in the district. Village health volunteers will in turn transmit this knowledge directly to villagers, the population most at risk.
Professor Katy Vincent and Danielle Pero (Nuffield Department of Women's and Reproductive Health) received funding for a pilot project aiming to increase awareness and inform Oxford residents about endometriosis and endometriosis-associated pain (EAP). Of equal importance, this project aims to inspire and empower women with EAP. An educational event will give women with EAP an opportunity to discuss their pain, through visual art, with members of the endometriosis community who would in some capacity understand their experience. Additionally, in collaboration with Endometriosis UK, we will disseminate current research and wellbeing resources for those with EAP during COVID-19. For our public audience, this will be an important opportunity to learn about endometriosis, and the unspoken impact it has on the lives of women with EAP.
About the PER Seed Fund
The PER Seed Fund provides funds for researchers to develop, deliver and evaluate Public Engagement with Research (PER) projects and activities. The PER Seed Fund is supported by the University of Oxford's Higher Education Innovation Fund (HEIF) and Institutional Strategic Support Fund (ISSF).