The Student Voice Prize essay competition saw its eighth year in 2021 and we are delighted to now be able to announce the brilliant winners and runners up of this year’s competition!
🏆 Zainab Alani, 1st year medical student, The University of Glasgow
⭐ Ana Maria Lopez-Ruiz, 5th year Medical student, the University of Cambridge
⭐ Gavin Choong, 3rd year, Bachelor of Laws (Honours) and Biomedical Science, Monash University, Australia
⭐ Meagan Collins, First year medical student, University at Buffalo Jacobs School of Medicine and Biomedical Sciences, USA
🏅Charlotte Mercer, 4th year medical student, The University of Southampton
🏅Jenny Wei, Biomedical engineering undergraduate student, The University of Toronto
🏅Amy Martin, 1st year medical student, The University of Sheffield
🏅Julia McCarthy, 2nd year medical student, Swansea University
🏅Isabelle Lee Ming Zhue, 3rd year medical student, University of Dundee
The 2021 Questions
With the world gradually emerging from the pandemic, the importance of placing rare diseases on the global health agenda has never been greater. Equity of healthcare, inclusion, and the challenges of isolation are recognised as pressing issues worldwide, and are all challenges faced by those living with rare diseases on a daily basis. Meanwhile a recognition of the unique and diverse experiences present across the rare space is integral to moving forward in a way that benefits all and leaves no one behind.
We wanted to reflect this in the questions we put forward to the students in 2021 to capture not only the patient experience in their answers as we strive for every year but also to highlight the pivotal role that patient groups can play in the research process from design to involvement. We also wanted there to be a focus on the integral relationship between identity, experience of life and experience of rare disease care, the healthcare system and daily life; thus putting intersectionality at the forefront of one of our questions in 2021.
Question 1: Rare Diseases and Health Inequalities
350 million people worldwide are affected by rare diseases. 3.5 million of these are in the UK. These patients are commonly subjected to health inequalities. Explore this by choosing an example of a rare and a common disease, from the same speciality, to compare and contrast. Discuss the causes underlying these inequalities.
Question 2: Rare Diseases and Intersectionality
A wide range of factors, such as race, wealth, and gender, can impact an individual’s experience of healthcare and society in general. This is known as intersectionality. Use a case study to demonstrate the specific challenges faced by patients with rare diseases on a daily basis. Discuss how intersectionality can mean that these people experience greater disadvantages.
Question 3: Rare Diseases and Research Participation:
Patient participation in research has massively helped to accelerate the development of treatments for rare diseases over the last decade. Discuss the benefit of patient participation in rare disease research and suggest barriers that exist to their participation. Explore how healthcare professionals can support patient involvement in research.
Title: Exploring Intersectionality; an international yet individual issue
The SVP team were looking for an answer to question two that was able to assess a range of factors and contexts when it came to the ways that different intersections of identity impacted experiences of healthcare. Alongside comments being made on the existing systems for rare disease care, and who they are tailored for. As well as being a medical student, Zainab is an individual living with the rare disease Myasthenia Gravis (MG) and used her personal experiences of how her different identities have intersected to inform her answer to question 2. It was this combination of her observation of the healthcare challenges that are present across the whole rare space and her recording of her own experiences and emotions that made her essay so unique and engaging and secured it the winning spot.
Zainab’s essay will be available to read in full on Orphanet Journal of Rare Diseases on the 28th February but check out some excerpts below!
“When going through the process of diagnosis at the age of 15, I was suffering from extreme fatigue secondary to my MG however I was dismissed, by more than one healthcare professional, as being a ‘teenager’ or ‘being lazy’. This, understandably, left me feeling defeated, embarrassed and ashamed; how dare I be wasting valuable NHS resources with my simple tiredness? Had it not been for the support of family and other healthcare professionals, my diagnosis would have gone unnoticed until it was too late for preventive action. Such toxic associations whether it is linked with age, race, religion or any other factor, feed into creating a discriminatory environment which pushes those from minority backgrounds towards the periphery.”
“Particularly in the UK, we are guilty of not tackling the disparity in life expectancy, between wealthy and poorer areas, vigorously enough. This form of discrimination is often overlooked and rather than being associated with less resources being used at the point of care, this discrepancy arises due to poorer communities not knowing how to or simply not being able to access preventive care…The wide reaching impact of intersectionality is tiring and draining, and is quite literally ageing certain groups more rapidly than others.”
Title: An Eye for an Eye – How Comparisons Between Cystinosis and Type 1 Diabetes Can Reveal Health Inequalities for Patients With Rare Diseases.
Ana Maria answered question one, exploring similarities and disparities between treatments for rare and more common diseases. Making comparisons between different conditions not only in the rare space but across the whole healthcare landscape can help to highlight where developments can be made in the rare space and where equity still needs to be placed at the forefront of conversations around care, resources and support. The SVP team were looking for answers which explored the reasons for these differences, and Ana explored these in a sophisticated way by looking both at different experiences of treatment and medical technology and also the social impacts of disease and how daily life differs for those living with both rare and more common diagnoses.
“Many diagnoses can become labels that give rise to stigma and fear, but these feelings are likely to be amplified when the disease in question is something most people have never heard of.”
Title: Intersectionality in the diagnosis and treatment of Elephantiasis- A case study
Gavin also answered question two and it was great to have a runner up coming from a background of biomedicine and from so far across the world too! Gavin answered the question through the lens of a case study focusing on Elephantiasis. This was a particularly interesting approach as it looked at a rare infectious disease and the impact of this on a specific global region, making it a great micro-lens to explore the subject of intersectionality. Resulting in a very unique approach to both the question and an approach that we have not seen a lot of in the Student Voice Prize in the past.
“Greater research in this field and a shift to intersectional principles would allow for the development of a suitable response to tackle the disease on all fronts, holistically.”
Title: Looking Through a New Lens: Insights into Patient Participation in Rare Disease Research
Meagan answered question three and the SVP team were looking for responses to this question which highlighted the positive impact of “patient-centred” research, beyond just trial recruitment, and recognised the need to bring this approach to the heart of industry and academic driven rare disease projects.
Meagan was partnered with CureGRIN foundation for her essay and spoke on how the pairing scheme allowed her ‘to contextualize a patient family experience and address the essay topic in a more meaningful way.’ The pairing allowed her to address an interesting case study for her essay and explore the high level research structures and collaborative approach that is utilised at the foundation, and her essay showed good understanding of how a well funded and organised patient advocacy group can improve research.
“As parents, caregivers, researchers, and healthcare professionals, we all have a role to play in finding treatments and cures for patients affected by rare diseases, and there is power in our collective ability to unite around this common purpose.”