Blog posts

April – Diving into the data

A quick recap

Last month, we discussed our attendance at the Sickle Cell and Thalassemia All-Party Parliamentary Group and described how we performed our literature search which involved screening over 800 articles. We also described the data preparation/cleaning steps that we performed for our hospital data analysis study.

What have we been up to this month?

We have been extracting data from the literature search and exploring specific indicators of inequalities (e.g. number of clinical trials, publications or research funding). For the hospital data analysis study, we have began to explore trends in our data. We are keen to share the following early findings with you, highlighting that these are preliminary as we are conducting more in depth analyses.

1. Literature review

From the studies we included in our literature review, we identified key themes of inequalities  including access to care (e.g. delay in receiving timely pain relief), lack of knowledge of sickle cell disease from health care professionals, poor health outcomes (e.g. hospitalisations) and stigma and racism.

2: Specific indicators of inequalities

One of these is research funding where we investigated the money awarded by top UK funders to sickle cell disease research and compared this with funding allocated to cystic fibrosis and haemophilia. The UK funders that we included were: the National Institute for Health and Care Research (NIHR), UK Research and Innovation (UKRI), which includes the Medical Research Council (MRC), and the Wellcome Trust (Wellcome). We used publicly available data to obtain the information below.

Total amount of money awarded by funder (GBP) between 2010 and 2024

  • Cystic fibrosis was awarded the most amount of money by all 3 research funders between 2010 and 2024.
  • Cystic fibrosis was awarded around £67 and £74 million more than sickle cell disease and haemophilia, respectively.
  • Both cystic fibrosis and haemophilia were awarded more research funding by UKRI and Wellcome though haemophilia received the least amount of total funding due to NIHR funding allocated to haemophilia.

3: Hospital data analysis

We have extracted routine hospital admission data from the Hospital Episode Statistics (HES) for the three conditions considered during the period 2013-2022. Through this, 32,253, 15,351 and 18,910 individuals were identified with sickle cell disease, cystic fibrosis and haemophilia, respectively. These numbers are higher than we would expect for all three conditions, so we are trying to identify why. The Cystic Fibrosis Registry is considered to capture 99% of individuals with cystic fibrosis across the UK, but as previously demonstrated in this article, there is a lot more uncertainty around the number of patients with sickle cell disease.

The importance of high quality data on the number of patients and their condition is nicely described in this statement from the Chief Executive of the Haemophilia Society, included in this report:

4. Conference  

Last weekend, Fred participated to the Annual Scientific Meeting of the British Society of Haematology (BSH) and gave a talk on sickle cell disease as a global health issue to an audience of several hundred participants. It was also an amazing opportunity to hear the brilliant B-Positive choir live! They were incredible.

Picture credit: Vincenzo Giacco (@Vin_Giacco)

Want to contact us?

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

March – Playing with publications and numbers

A quick recap

Last month, we outlined the plans for the literature review, data analysis and engagement with patients and healthcare professionals components of our Sickle Cell Comparative Research project. This month, we report our progress (preliminary results) with the literature review and data analysis work.

Reflecting on our progress over the last four weeks

We kicked off this month by attending the Sickle Cell and Thalassemia All-Party Parliamentary Group (SCT APPG) meeting at the houses of parliament. John James OBE, CEO of the Sickle Cell Society and MP Janet Daby explored key advancements in sickle cell disease treatment. Community members had the opportunity to voice their questions and concerns.

OBJECTIVE 1: PERFORMING LITERATURE REVIEW SEARCH 

  • After finalising the protocol of our literature review, we searched 3 electronic databases (MEDLINE and PsychInfo which include published scientific journal articles on a range of topics (e.g. medicine, health and behavioural and social sciences) and the Health Management Information Consortium which includes reports from the Department of Health and The King’s fund). 
  • Besides the electronic databases, we have also identified relevant literature from organisations such as the Sickle Cell Society and the Cystic Fibrosis Trust, targeted webpages, disease registries and google searches.
  • We used search terms relating to our conditions of interest (e.g. “sickle cell disease”), inequalities (e.g. “barrier”, “survival”, “access”) and the United Kingdom (e.g. “Britain”, “UK”) 
  • We included studies of children and adults of any age and in any setting (e.g. GP, hospital and community) and excluded studies published before 2010.
  • In total, our search yielded 905 articles across all 3 databases, after excluding 74 duplicate studies
  • The title and abstract of 831 papers have been screened and so far 25 papers have been included in the final literature review.
  • More information on our findings from these studies will be shared next month!

OBJECTIVE 2: CONDUCTING DATA ANALYSIS

  • Using NHS hospital episodes statistics admitted patient care data, we included all individuals with clinical codes, International Classification of Diseases 10th Revision, for sickle cell disease, cystic fibrosis and haemophilia between 2013 and 2022.
  • We captured information on age at first hospital admission, gender, ethnicity and geographical region
  • We used the 2019 English Indices of Multiple Deprivation to capture information on deprivation (from least deprived to most deprived areas)
  • In total, after cleaning the dataset and performing exclusions (e.g. excluding those with missing age at hospital admission), we began the data analysis for this study.
  • While we are keen to share regular updates on our progress, we want to provide accurate comparisons with several indicators of inequalities. This requires careful analyses of the health data outlined above, which usually take weeks rather than days.

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.