Sickle Cell Comparative Research to Inform Policy

Background 

A recent parliamentary inquiry into avoidable deaths and failures of care for sickle cell patients in secondary care identified inadequate investment in sickle cell care. It recommended that the NHS Race and Health Observatory (NHSRHO) undertake a study into sickle cell care in relation to race and ethnicity. In collaboration with the National Haemoglobinopathy Panel, the UK Forum on Haemoglobin Disorders, and the Sickle Cell Society, NHSRHO has decided to commission comparative research into Sickle Cell by condition (contrasting with, for example, Cystic Fibrosis), and by geographic health unit. This work will build on research on sickle cell disparities in the United States. 

It is hoped that this research provides us with a rigorous evidence base for comparing Sickle Cell care and research with other rare inherited diseases such as Cystic Fibrosis, and across geographic health units. The purpose of collecting this evidence is to identify UK disparities in sickle care and research that may be addressed by policy recommendations. 

Why this work is important 

Sickle cell disease predominantly affects people with African or Caribbean heritage. A report by the Sickle Cell Society and All-Party Parliamentary Group highlighted inequalities in healthcare experience and variability in treatment for people living with sickle cell. This report also exposed a worrying shortfall in adequate care and treatment for sickle cell patients. Health inequalities result in part from structural biases in the healthcare system. Comparative research can play a valuable role in evidencing these biases and their consequences as a basis for evidence-based policy recommendations.  

Aim 

To describe differences in health and research spend, and outcomes, for sickle cell patients compared with other inherited disorders such as cystic fibrosis and haemoglobinopathy, as well as differences by region. 

Project outputs 

There are three intended outputs from this research project:  

• A literature review of comparative (by condition and geography) sickle cell research (government and NHS reports as well as community-produced and experience-based evidence if appropriately validated).  

• Analysis of health service and research spend, service organisation, and health outcomes over time. 
• Analysis of primary data sources and generate academic manuscript(s) that are submitted for publication in peer reviewed journals, alongside a policy recommendations report.  

Timelines 

The study began in June 2023 and is expected to conclude in Autumn 2024. 

Further information 

For further information please contact Dr Carl Reynolds (Senior Clinical Advisor) at info@nhsrho.org