The Student Voice Prize
What is the patient group pairing scheme?
**Please note, the patient pairing scheme is now closed for patients and students!**
The Student Voice Prize Patient Group Pairing Scheme gives medical students, nurses and biological sciences undergraduate and masters students the chance to be paired with a rare disease patient group to learn first-hand about their condition and patient experience.
Students will arrange an interview of up to 1.5 hours with their patient pairing and use the insights gained during the conversation to enhance their essays.
Benefits for patient groups
The scheme benefits patient groups because it allows groups to share their story and experiences with a doctor, nurse or scientist of tomorrow who may never have considered working with rare disease before.
Benefits for students
The scheme benefits students because it introduces them to rare disease 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.
Patient pairing for patient groups – how does it work?
Now closed for 2023
**Please note, the patient pairing scheme is now closed for patients and students!**
If you’re part of a rare disease patient group that wants to inspire the minds of tomorrow, then you don’t want to miss the opportunity to be involved with The Student Voice Prize.
The competition kicks off for students on the 20th of September, if you are successfully paired, you will have between then and the 8th of November (when the patient pairing scheme ends) to connect with your student for a discussion of up to 1.5 hours.
It is the responsibility of the student to arrange the interview.
Participating patient groups will be expected to:
- Share information with the student about their rare condition and their experience as a patient.
- Endeavour to answer the student’s questions where possible.
- Commit to spending up to 1.5 hours in a phone or video conversation with their paired student before the 8th of November.
Fill our the patient group pairing form below for your chance to be paired with a student for 2023!
Check out what previous participants have to say about the scheme
I've been so inspired by the passion shown by the students I've been paired with. To have a direct line to the game-changers of the future is a huge privilege, especially as we can highlight the needs of our rare community
- Patient group representative
I highly enjoyed writing and learning about the lived experiences of patients with rare diseases. As a future doctor, I now have more empathy and a better understanding about how patients with rare diseases navigate the healthcare system and their experiences in doing so
- Student
We look forward to the Student Voice prize every year and always prioritise participating in it. It's a great means of raising awareness of rare diseases in a way that materialises in a fantastic end-product (the essay!)”
- Patient group representative
My perspective has changed so much for rare diseases and the rare disease community, and I hope that others who take part will feel the same. It was a fantastic opportunity to learn about and try to understand through wonderful conversations. It is extremely different getting to talk to someone about their lived experiences versus reading the literature and textbooks!
- Student
Patient pairing for students
Now closed for 2023
The chance to be paired with a patient group is an invaluable experience for a student.
While students do not need to participate in the patient pairing scheme to submit an essay to The Student Voice Prize it’s a great opportunity to gain a first-hand account of what it’s like to live with a rare disease. This new perspective is guaranteed to elevate their essay!
Participating students will be expected to:
- Prepare a series of questions prior to their interview.
- Arrange a time for the interview with the patient group in advance.
- Respect the views and experiences of the patient representatives.
- Maintain confidentiality and not disclose any details that haven’t been agreed in advance with the person they are interviewing.
- Remove any identifiable details about the person they interview – bearing in mind that in such small patient populations, it can be easy to identify people with very little information.
In order to respect the time and energy of the patient group advocate, it is expected that all paired students who have had a conversation with an advocate will subsequently write an essay. Please take this into consideration when applying to the pairing scheme. If you have any questions about this, please get in touch at studentvoice@rarebeacon.org
Not sure about something or looking for more information on the patient pairing scheme? Check out our FAQ page
How to make the most of the interview
How you go about asking questions is up to you. It’s likely to depend on your past experiences and whether you have an idea of which essay question you plan to answer.
However, in general, this is an opportunity for you to speak to someone with a unique experience, uninterrupted for an hour.
You are there to learn from them, to reflect on what you’ve learned and use that to not only answer an essay question but to develop your skills for future practice.
Using open questions is a great way to help your interviewee to lead the conversation. Many volunteers giving their time will be familiar with talking about their life experiences and so will be able to talk on all sorts of subjects.
It might be worth establishing early on why they chose to be a part of the scheme and what do they want you to know. Listen and reflect back on what you’re hearing and learning.
It may make you feel nervous to turn up without “a plan”. You can always do research beforehand and note down a few topics you would like to discuss or specific questions you want to ask. After you have used open questions and listened to your interviewee, you can always turn to more closed questions later.
Have a read of the rules and regulations. In general, if you go into the exercise with good intentions and an open mind you will have a really rewarding time. Don’t be scared of making mistakes, we all do it. It’s part of learning!