The Diverse Data initiative is an ambitious programme of work at Genomics England aiming to reduce health inequalities and improve patient outcomes in genomic medicine.

Sickle cell is one of our focus areas and within this workstream we are collaborating with King’s College London and NIHR BioResource on Improving Black Health Outcomes (IBHO) BioResource, a new research programme focused on improving our knowledge and understanding of health conditions and their unique impacts on UK Black communities.

In particular, we are working with IBHO to build a world-leading sickle cell genomics research resource. 

For this workstream, we are seeking a Research Participation and Involvement Manager with lived experience of sickle cell, bringing the knowledge, insight and expertise that comes from having first-hand experience of this condition, either as a patient, a carer, or someone deeply involved with the community.   

In this role, you will work with Genomics England’s research partners, NHS Trust recruitment sites, sickle cell patients and their support networks, and use your own lived experience to develop, promote and contribute to activities that will increase opportunities for participating in research in the Diverse Data Sickle Cell workstream. 

Please note this is a fixed term contract until March 2025. 

Everyday responsibilities include: 

• Bringing in your unique lived experience expertise to support site mobilisation efforts, working closely with the Diverse Data Mobilisation and Trial Manager, the Ethics Lead, and the delivery team to enhance Sickle Cell recruitment site activities. 
• Ensure effective delivery of research participation and involvement activities in recruitment sites, monitoring feedback from participants and research staff, and ensuring actions are taken to improve research participation and involvement efforts. 
• Proactively identify and support the development of new opportunities for collaborative research participation and involvement activities with organisations such as NHS Research & Development (R&D) offices, NHS PPIE managers, community-based organisations and Haemoglobinopathy Coordinating Centres (HCCs), that can be delivered by them.  
• Work with Genomics England’s Sickle Cell Advisory Board and Diverse Data Community Manager to review and shape PPIE plans submitted by recruitment sites.
• Develop supporting documentation and provide training for staff at recruitment sites so that they can follow best practices for research participation and involvement for Sickle Cell participants. This includes providing training and information on the research study and the National Genomic Research Library.    
• Help to plan events, contribute to reports and articles, and share learnings from research participation and involvement activities at internal and external meetings. 
• Raise awareness of the value and impact of contributing to Genomics England's research and other activities  and promote these opportunities to participants.   

Skills and Experience for success: 

• Proven experience in clinical trial processes, including expertise in patient consent, ethical considerations, and site mobilisation. 
• Strong communication skills, effectively engaging with diverse stakeholders such as research staff and participants to ensure clarity of study content.
• Deep understanding of attitudes towards research in sickle cell communities and best practices to promote research participation and involvement. 
• Skilled in report writing, developing recruitment strategies, and demonstrating improvements in participant engagement. 
• Exceptional collaboration abilities, working across teams to ensure active participation at all sites, enhancing research outcomes and overall study involvement. 

To apply for the role, please submit both a CV and a cover letter including the following:

• Why you are interested in the role and why you believe you are a suitable candidate. 

• A reflection of the skills and experience outlined in the ‘Skills & Experience’ section of the job advertisement, demonstrating how you meet the key requirements for the position. 

Closing date for applications will be Tuesday 15th October 2024. 

Please note due to the nature of this role we would consider a secondment for the successful candidate.