Apply to be paired today!
Each year we give rare disease patient groups the opportunity to share their lived experiences with a doctor, nurse or scientist of tomorrow through the Patient Group Pairing Scheme.
Patient groups submit an application to be paired with a student to have a conversation based on the questions set by the student. These conversations can last up to an hour and a half and should contribute to the student’s answer to one of the three essay questions set by the SVP team.
What is The Student Voice Prize?
The Student Voice Prize is an annual, international essay competition that focuses on raising the profile of rare diseases within the medical field, particularly among medical students, nurses and scientists who may have never come across rare diseases in their training.
The Student Voice Prize seeks to influence the next generation of medical professionals and those who will come across rare disease to consider them more in their practice. With over 7,000 rare diseases, it’s of course impossible for clinicians to know about all of them. However, it is possible for doctors to appreciate that rare diseases are collectively common and recognise the exceptional challenges faced by patients with rare diseases.
By entering the competition – or even just reading the essays of past winners – medical students are invited to ‘dare to think rare’ and encourage their peers to do the same. It is a simple thing, but classmates and peers have immense influence on each other just through conversation and the sharing of stories and experiences. The Student Voice Prize seeks to build this network of enthusiastic and interested medical professionals.
The Patient Group Pairing Scheme invites patient groups and advocates to be part of this network. It is only beneficial to patient groups to have medical students interested and aware of their rare condition. The Patient Group Pairing Scheme provides the opportunity to build connections that can lead to fruitful collaborations in the future.
How does the Patient Group Pairing Scheme benefit patient groups?
The scheme benefits patient groups because it allows groups to share their story and lived experiences with a doctor, nurse or scientist of tomorrow who may never have considered working in rare disease before. Sharing the patient experience and what it’s like to live with a rare condition have shown time and time again to have a large impact on the personal learnings and future clinical practice of the students who enter the competition. The Patient Group Pairing Scheme has fostered long-term connections between patient groups and students, which has led groups to build sustained interest in their rare condition.
How does the Patient Group Pairing Scheme benefit students?
The scheme benefits students because it introduces them to rare diseases early on in their career and helps them to understand the patient experience. They will learn a first-hand account of what it’s like to live with a rare disease in the hopes that they walk away with a new perspective on rare disease care, policy, research and treatment.
Why do we need The Student Voice Prize?
It has been proven that there is a lack of understanding and experience of rare disease amongst healthcare professionals. Educating health professionals remains a key challenge and priority for the rare disease community.
The 2013 Shire Rare Disease Impact Report found that 88% of physicians in the UK reported that it is more difficult to address the needs of a rare disease patient in a typical office visit. Meanwhile in 2021, the new UK Rare Disease Framework stated increasing awareness of rare diseases among healthcare professionals as priority number two. The report recognised that GPs, as the gatekeeper of health services, will not routinely have the knowledge or experience to correctly identify that a patient is living with with a rare condition. This lack of knowledge and experience leads to long diagnostic delays and significant distress for rare patients.
This lack of education and understanding continues to be highly detrimental to the rare community, as nearly 19% of those leaving medical school are choosing to become GP’s (2018.) Another detriment is that the knowledge and experience of handling rare diseases are not shared between medical practitioners. This makes coordinating the care of rare patients difficult later down the line. In fact, the 2013 Shire Report found that 62% of physicians stated that there aren’t enough opportunities to network with other physicians who treat rare diseases. This is a real issue when rare diseases so often affect multiple bodily systems and present an array of symptoms that cannot be pinned down to one clinical specialty.
Students volunteering through The Student Voice Prize to be educated this early on in their medical careers can only be a positive thing for the rare community. Students’ willingness to learn helps them consider the possibility of rare and build the rare patient experience into their professional practice as early as possible. Conversations with rare patients can have a real impact on anyone, especially students who have chosen to become doctors to treat and help people. Patient groups should not underestimate the impact this can have and the powerful lessons that can be learned by participating in the Patient Group Pairing Scheme.
…If you needed any more convincing then surely the proof is in the pudding, right? Check out what paired patient groups and students had to say about the experience in the past.
It was empowering to feel that our community’s voice had been heard. When you have a rare disease like Poland Syndrome, you often feel dismissed, discounted and unheard as there is so little knowledge out there about what it is and how to treat it, so our community often travel this road alone until they work with us. Our student pair has remained in touch and we invited her to take up a position on our scientific advisory board. We are really keen that our advisory board is a vibrant and energetic group that truly cares about Poland Syndrome and improving its diagnosis and treatment. We have been trying to establish relationships with universities and hospitals for a long time, to gain interest with students and HCPs with very little success. Building a relationship with a medical student and getting an essay published is a first for us and would not have been possible without The Student Voice Prize & our student pairing. The opportunity offered to a small charity like ours through The Student Voice Prize is unique and truly makes a difference in what we understand about Poland Syndrome and how our community is heard and understood.
Working with a patient pair was definitely the most rewarding part of this essay. My eyes and my heart were opened up to a disease I had only learnt about two hours prior but I now have a whole new perspective about medicine in general, and specifically rare diseases. I definitely recommend working with a patient pair as it’s an experience unlike any other I have had at medical school so far!
Having the time to speak to the parent of a young child with a rare disease was invaluable for understanding the lived experience of patients with rare diseases, and the challenges that they face. It’s something that I wish we learnt more about in medical school, as each patient has a unique story to tell, and the points that I was able to reflect on are applicable to all clinical practice.
How do I apply to be paired?
It’s simple to take part!
Head to: https://old.rarebeacon.org/patient-group-pairing/
- Read the pairing terms of reference
- Fill out your application
- Wait for the SVP team to get in touch with more information about potential pairings! (NB: This will be after the 5th October)
You have until 9th of November 2022 to submit your application!
