The Student Voice Prize
The 2024 Patient Pairing Scheme is now closed
What is the patient pairing scheme?
The Student Voice Prize Patient Pairing Scheme gives medical students, nurses and biological sciences undergraduate and masters students the chance to be paired with a rare disease patient or advocate 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 inform and enhance their essays.
Benefits for patient groups
The scheme benefits rare disease patient and advocates because it allows them to share their story and experiences with a doctor, nurse or scientist of tomorrow! The interaction could inspire future medical professionals 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?
Open 4th September – 30th October
If you’re a rare disease patient, patient group representative or advocate who 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 2nd of October. If you are successfully paired, you will have between then and the 30th of October (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 patients, patient group representatives and advocates will be expected to:
- Share information with the student about their rare condition and their experience as a patient or advocate.
- 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 30th of October.
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
Due to a high volume of registrations, we are no longer able to accept new students for the patient pairing scheme, as we currently do not have enough patients or advocates to accommodate additional pairings.
The chance to be paired with a rare disease patient or advocate 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 their pairing 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
How to prepare for your patient pairing interview
This advice is for students.
- Do your research
Before the interview, familiarise yourself with the rare condition your pairing represents. You don’t need to become an expert, but having a foundational understanding of the condition will enable you to focus the conversion on their lived experiences rather than spending time on background information.
- Research the disease: learn about its symptoms, progression, and current treatment options.
- Familiarise yourself with their patient organisation: if your pairing represents a patient organisation, explore their mission and goals.
- Consider your surroundings
Ensure the space your using for the interview is appropriate and minimises distractions to both you and your pairing. Ensure you have an adequate internet connection and that your camera and microphone are working correctly in advance of the call.
- Ask open questions
We recommend preparing a list of questions ahead of your interview. While these can serve as a great starting point, don’t worry if the conversation takes an unexpected direction. It’s important to remain flexible and allow the patient or advocate to steer the discussion, as their insights and experiences should naturally shape the flow of the interview.
- Prepare broad, open-ended questions: tailor your questions to explore how the condition impacts their everyday life.
- Practice active listening
Active listening is crucial to ensure that your pairing feels heard and respected.
- Listen attentively, allowing your pairing to lead the conversation and express their thoughts freely.
- Approach the interview with empathy, being mindful of emotional challenges they may face.
- Be sensitive to difficult topics, offering them the option to skip or pause if needed.
- Create a trusting environment by staying flexible, compassionate, and respectful throughout the discussion.
- Follow up
After the interview, it’s important to continue showing respect for the time and information your pairing provided.
- Thank them by sending a follow up email expressing your appreciation.
- Honor confidentiality by use pseudonyms and removing any identifiable features from your essay.
- Gain consent via the form supplied by the Student Voice Team (found here) and submit this alongside your essay.
- Share your essay with your pairing once judging is complete.
Not sure about something or looking for more information on the patient pairing scheme? Check out our FAQ page: