Category: Uncategorised

February post – Getting started

A quick recap

We are working on the Sickle Cell Comparative Research to Inform Policy project exploring inequalities in the care of people with sickle cell disease funded by the NHS Race & Health Observatory, and conducted at the School of Public Health, Imperial College London.

What have we been up to this month?

1. Objective 1: Conducting a literature review

a heap/pile of papers

    • Building on the No One’s Listening Report of the UK Sickle Cell Society, our aim is to gather evidence from government reports, academic literature and relevant organisations on inequalities in sickle cell disease and compare them with other inherited diseases such as cystic fibrosis and haemophilia.
    • We have developed a protocol for this review which includes a detailed approach on how we will obtain this information; which exact sources we will search; and what information we will extract from these sources.
    • We have began to search and gather evidence from a wide range of sources
    • This piece of work is important for two main reasons: i) it will summarise existing evidence and help identify particular gaps; and ii) by assessing the existing evidence, it helps avoiding duplicates efforts.

2. Objective 2: Planning our data analysis study

    • Our aim here is to use UK NHS hospital data (click on image below to find out more) to investigate hospitalisations in sickle cell disease, cystic fibrosis and haemophilia.
    • We have developed a protocol detailing how we will conduct this study and what analyses we will perform.
    • We have securely extracted anonymous hospital data of people with sickle cell disease, cystic fibrosis and haemophilia. We will use this data to answer a range of questions including on number of hospitalisations and length of hospital stay.

3. Objective 3: Engaging with patients and healthcare professionals

    • We are in the process of securing ethics approval to run workshops and focus groups with patients and healthcare professionals. This is a necessary but quite tedious piece of work required before we can engage with these stakeholders. More on this next month.

BLACK HEALTH MATTERSSource: BLACK HEALTH MATTERS (emory.edu)

What inequalities will we be exploring in our research?

We will explore a wide range of inequalities experienced in sickle cell disease and compare with other conditions. These inequalities will include but are not limited to the following:

    • Access to care for example hospital waiting times and length of stay
    • Poor health outcomes
    • Quality of treatment
    • Stigma and racism
    • Allocated research funding

When will we complete this work?

This work is set to be completed in autumn 2024.

Want to contact us?

If you have any questions about this project, feel free to email r.muzambi@imperial.ac.uk, f.piel@imperial.ac.uk or to post a comment.

January post – Welcome & introductions

Welcome on this new blog which aims to share updates on the Sickle Cell Comparative Research to Inform Policy project, funded by the NHS Race & Health Observatory, at Imperial College London.

We started our new project exploring inequalities in the care of people with sickle cell disease this month. Inequalities in sickle cell disease have been recently highlighted in the Sickle Cell and Thalassaemia All-Party Parliamentary Group inquiry into avoidable sickle cell deaths, titled ‘No-one’s listening’.

The NHS Race and Health Observatory recently published the  ‘Sickle cell digital discovery report: designing better acute painful sickle cell care’ report which outlined the poor experience that emergency hospital care that sickle cell disease patients experience from first-hand accounts and described key recommendations to improve care of sickle cell disease patients. 

The aim of our study is to better document and understand the inequalities in the care of sickle cell disease patients across England by comparing their care with other conditions considered similar such as cystic fibrosis and haemophilia. 

Meet the team 

(from left to right)

  • Dr Fred Piel – Senior Lecturer in Spatial Epidemiology and global expert of sickle cell disease, lead of the project | X/Twitter: @FredPiel
  • Dr Rutendo Muzambi – Research associated in Health Inequalities and epidemiologist – researcher on this project| X/Twitter: @Rutendo_rm
  • Dr Dan Dexter – Specialist Haematology Registrar – haematologist providing clinical input on this project.
  • Ganesh Sathyamoorthy – Deputy Director of the Ethnicity & Health Unit and trustee of the UK Sickle Cell Society.
  • Professor Alex Bottle – Professor of Medical Statistics – collaborator from the Dr Foster Unit

What work will we be doing for the coming months? 

  • Reviewing current evidence on inequalities in sickle cell care comparing with cystic fibrosis 
  • Perform data analyses assessing in inequalities in accident and emergency care such as hospital waiting times using data from hospitals across England 
  • Conduct workshops and surveys to understand sickle cell care patient’s experience and healthcare professionals working with people with sickle cell disease

So, watch this space for future monthly updates!

See you next month.