Exploring the design and operation of community health and wellbeing sickle cell hubs (‘sickle hubs’) to relieve pressure on GPs and hospital services

Sickle cell disease (SCD) primarily affects ethnic minorities so in addition to having a chronic health condition requiring lifelong medical care and frequent hospitalisations, patients experience stigma and poverty, with consequent marginalisation and disparities in healthcare. Our research questions focus on exploring the functions, operation and locations of community SCD health and wellbeing hubs that bridge the community-health service interface. The questions have been articulated by our Liverpool sickle cell patients and their carers to reflect their need for more holistic, patient-centred care in their communities. These hubs could provide holistic and culturally appropriate support, thereby improving SCD patients wellbeing and resilience. This would also benefit health services by reducing workload and helping patients navigate NHS access pathways more effectively. Our research responds to a highly critical UK government report highlighting the neglect of SCD and recommending improvements in community provision. In the UK, funding for SCD is disproportionately low compared to other chronic diseases and resources are concentrated in high-prevalence areas. There is very little evidence to guide the design and function of community SCD hubs that is transferable to the Liverpool area where prevalence is low. Evidence from the USA, from non-SCD chronic conditions and from studies of social determinants of health, indicate that community hubs can reduce hospital visits and improve quality of life, resilience and patient outcomes. Examples of potential SCD hubs functions include health education, counselling and advice on screening and buddies for hospital appointments. Our 15-month project will collate and use evidence to co-design (with patients/carers) community SCD hubs for Liverpool (i.e. an intervention) for trialling in a subsequent study, focusing on adult healthcare and the paediatric-adult transition. Our methodological framework is the Delphi technique with three rounds of engagement with 8-10 diverse, representative participants to achieve a consensus recommendation about the intervention. Additional information from a scoping literature review, survey, focus group discussions and interviews will feed into the Delphi discussions. At the centre of all our activities are community research champions who we will train and support, drawing on NWC-CRN s successful model for engaging marginalised communities in research. Our primary output is a test-ready intervention to trial 4-5 SCD community hubs and to assess feasibility, acceptability and potential evaluation metrics. Secondary outputs include a literature review (month 5), a cohort of trained community research champions (start month 3), community engagement in research, a co-refined Theory of Change (figure 1) to underpin future testing of the intervention, and workshops (months 3,14) to gain multiple perspectives and share our findings with relevant local organisations. Building on our applicants and collaborators networks, we will extend our list of target organisations for knowledge-sharing and determine the timing and best modes (e.g. social media, face-to-face, publications) for reaching them. Ultimately our impact will be to contribute to reducing reduce health disparities for SCD patients in Liverpool and to relieving pressure on the NHS, simultaneously strengthening patients research engagement and trust in health services to reduce their marginalisation.