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.