Workshops
Sicklecell Workshop
Following the Bristol Community Health Day in October 2022, a researcher from Genomics England visited the city to gather insights from two specific groups about the design of patient information sheets. These groups included a Black mothers' group, a youth Sickle Cell group, and an adult Sickle Cell group. Participants from these three focus groups critically reviewed current patient information sheets related to health and Genomic Research, leading to significant and necessary revisions.
Genomics England produced an animated piece of research feedback using authentic voices from the community who shared their lived experience of the impact of not listening to patients and not making information fully available to them in terms of how information should be structured.
This research was vital for subsequent studies on Sickle Cell and genomic and medical research. Further workshops were conducted in Bristol, building on the findings from these sessions, to address issues related to Black maternal health and Sickle Cell. These workshops have continued to inform and improve health communication and research practices in our community.
Family Sickle Cell Workshop
Under the Genomics England Diverse Data Initiative, a Family Sickle Cell Workshop was held in early April 2023. This workshop specifically targeted families with children living with Sickle Cell, featuring participants ranging from three to 18 years old, as well as their parents and grandparents.
Building on the insights from earlier workshops held in Bristol, the patient information sheets used in this workshop were highly effective. These sheets had been designed with substantial input from patients themselves, ensuring the language and layout were precisely tailored to their needs.
The success of this workshop stemmed from thorough preparation, the quality of the patient information sheets, a strong emphasis on listening to people with lived experiences and the presence of children, parents, and grandparents in the room sharing their experiences of living with and caring for children living with Sickle Cell disorder.
The feedback gathered was comprehensive and provided a clear view of the challenges parents face: Coping when their children is going through a crisis, the lack of understanding from some healthcare professionals, feelings of being unheard and uncared for, and the frustration of feeling isolated in their struggles.
As a result of this workshop, researchers from Genomics England were able to gather valuable data to further develop healthcare initiatives and treatment methods for children living with Sickle Cell. The goal of providing generational information that would positively impact the lives of people with Sickle Cell, especially children, was successfully achieved.
Join our community and take an active role in advancing health research by participating in one of our Bristol Health Research Workshops