Dr Muzambi’s current research uses primary and secondary care electronic health records to understand infections, antibiotic use and vaccination in sickle cell. She came to meet with the Health Data Research UK team to discuss the historical and current challenges of researching this much misunderstood genetic condition, and the lens it provides for understanding health care data inequalities, and the challenges of accessing diverse data sets. 

Could you tell us what sickle cell is and what you are aiming to understand through your research?   

“My research focuses on infections in people with sickle cell; a mutation in the haemoglobin of red blood cells which causes them to become sickle-shaped, hard, and sticky – which is where the name comes from. In the UK, it is more prevalent in African and Caribbean populations and affects around 19,500 people; making it one of the most common genetic conditions in the country. Globally, it is more prevalent in countries where malaria is endemic.   

These cells can block blood vessels, leading to serious and varied health complications. One such common complication is a sickle cell crisis; sudden, severe episodes of pain that often require hospitalisation. People may also develop complications such as chronic kidney disease and be at higher risk of infections. About 90% of people with sickle cell anaemia have impaired spleen function by the age of five, which is why they are recommended to receive all routine vaccinations, additional vaccines, and long-term antibiotics. My research aims to better understand infections within this population.” 

Health Data Research UK works to enable and accelerate trustworthy health data use. Through an Equity, Diversity and Inclusion (EDI) lens, our work aims to improve access to diverse datasets, advance diversity data standards, and capacity building.

What specific EDI-related challenges have you faced when working with electronic health records for sickle cell research and what can we learn from your experiences?  

“One recurring challenge is incomplete ethnicity coding in electronic health records. This may limit who can be included in analyses and is especially problematic given the number of people with a sickle cell diagnosis is already relatively small. Another challenge is that sickle cell is sometimes miscoded in health datasets. In my previous study, for instance, patients with a suspected diagnosis or sickle cell trait may have been coded as having a sickle cell diagnosis, which inflates prevalence and complicates analyses. Details of on subtype of sickle cell are often missing, which also constrains the analyses I want to do. Another issue is that migration history is under-recorded in electronic health records; for sickle cell, this matters because individuals who moved to the UK after birth may not be captured by the newborn screening programme, making them harder to identify and connect to appropriate care.” 

“In terms of what we could learn from these challenges, improved data linkage between data sets would be transformative. For instance, in the UK, we have the National Hemoglobinopathy Register, which is a register of people with sickle cell condition, yet not everyone with the condition is in the database. For example, people who have migrated to this country may not be aware of the register, and historically, registration was offered as a choice. Better linkage between the Register and primary and secondary care data would undoubtedly enable a better understanding of the condition.” 

I understand there is a history of mistrust towards research within the sickle cell community – can you elaborate on this?    

“This links back to sickle cell condition being more prevalent in African and Caribbean populations. There is a long history of mistrust within the sickle cell population which can be traced back to the arrival of the Windrush generation. Although Black communities were already present in the UK, this period marked the first time many healthcare services encountered higher numbers of people with sickle cell. Harmful misconceptions were spread about the condition – for example, claiming that sickle cell was infectious. This contributed to a climate shaped by racialised assumptions about who was affected and why. And at one point, there was a suggestion made in parliament that Black people should be excluded from donating blood, based on the false belief that Black people were “passing on” sickle cell.  

Because of this long history of stigma and misinformation, many people still dislike hearing the term “sickle cell disease,” which is why I often avoid using it in community settings and in my public engagement work. This of course makes embedding public engagement throughout my research particularly essential.  

This mistrust is reinforced by ongoing experiences within the healthcare system. A key characteristic of sickle cell is sudden, intense episodes of pain that frequently require urgent treatment. Yet people experiencing a sickle cell crisis often report discrimination in A&E, including having pain questioned or not being given adequate pain relief or care. These issues have persisted for decades, with reports coming up in the news even now highlighting long wait times for emergency care, avoidable harm and even preventable deaths.  

Understandably, this has deepened mistrust in healthcare—and there is a knock-on effect with research as well. I think mistrust with research is also linked with the mistrust in the Black community in general, due to events in the past, such as the Tuskegee trial, involving Black men in the US, in which researchers did not follow ethical practices.” 

Enabling trust and transparency has been a vital aspect of HDR UK’s work on the SafeGUARDs framework, which sets out principles for the responsible use of people’s data and ensuring the benefit of research is more fairly distributed across society, and Patient and Public Involvement and Engagement (PPIE). Can you describe some ways you have embedded PPIE into your research?    

“Because of the long history of mistrust within the sickle cell community, I felt it was essential to ensure community members were meaningfully included in my research. For me, involvement must go beyond a tick‑box exercise. In my current project, I work closely with a steering committee of three people: a clinician, a sickle cell advocate with policy experience, and a representative from the Caribbean and African Health Network. They have offered invaluable advice on how to recruit my PPIE group and how to approach involvement. For example, to include PPIE members from across the UK and the importance of balancing gender and age representation. Ultimately, I formed a PPIE group of six people. Some have lived experience of sickle cell, while others are parents caring for a child with the condition. 

One ongoing challenge has been navigating power dynamics. And so, creating a space where everyone feels confident to speak openly is something I continue to work on. I have already seen the important impact of the PPIE work, which I intend to share with my PPIE group. For example, I learnt about antibiotic treatment switching which helped me to think about my study design to ensure I capture people in this case.  

You have also recently explored research and funding disparities for sickle cell disease as compared with cystic fibrosis and haemophilia. What did you find? And what is next for this piece of research?  

A woman presenting information to a group of people.

For a long time, people have compared funding and care for people with sickle cell to other common inherited conditions like cystic fibrosis, which is mostly common among White people in the UK. Specifically, I looked at inequalities in funding between sickle cell, cystic fibrosis and hemophilia. I found, for example, that the average research grant funding per person was £184 for sickle cell and £703 for cystic fibrosis – this is a huge difference in funding. We also looked at the number of clinical trials, which was far lower per person for sickle cell than for other genetic conditions, such as cystic fibrosis and hemophilia, despite sickle cell being much more common. 

We published these findings in a report and presented them in the House of Lords in 2025. This was a good steppingstone to raising awareness in the policy spaces.  

Finally, I understand you have experience as a host for HDR UK’s Black Internship Programme. Any thoughts on the experience?    

I’m a huge fan of the Black Internship Programme – I think it’s excellent. My background is in pharmacy; I completed a master’s degree in pharmacy and always knew I wanted to go into research. But it was quite a difficult path. I applied for several PhD programmes and was repeatedly unsuccessful. The PhDs I applied for were mostly in public health and epidemiology, and it was only after meeting a professor whose work I was really interested in that I received some crucial advice: I was lacking the quantitative health data science skills needed to be competitive for a PhD. 

Following that, I went on to do a second Masters in epidemiology in the Netherlands. This was just before the UK officially left the EU, which meant I was able to pay a significantly reduced tuition fee — an opportunity many young people today are without. That experience allowed me to build a solid foundation in health data science before going on to do a PhD. Gaining similar skills can now be very challenging without funding for a master’s degree, especially for those who, like me, already hold one. That’s one of the key reasons I love the Black Internship Programme: it makes access to these skills, and therefore your career goals more achievable.