Patient Group Pairing

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What is the patient group pairing scheme?

 

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.

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.

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.

 

What is Expected of Patient Groups?


Timeline:
 If you are submitting a form on behalf of a patient group, submissions will be open from the 7th September to the 9th of November.

 

Participating patient groups will be expected to:

  • Share basic information with Beacon for us to hold in a database to allow us to match students with groups.
  • Allow Beacon to share a contact email address with any matched students.
  • Arrange to spend a time of up to 1.5 hours in phone or video call conversation with their paired student before the 9th November 2022.
  • Share information with the student about their rare condition and their experience as a patient.
  • Endeavour to answer the student’s questions where possible.
  • NOT seek medical advice from the student.
  • Respect the students other time commitments when arranging calls.
  • Ensure that only ONE patient representative from the organisation applies to take part in the pairing scheme on behalf of the organisation.
  • Ensure that the individual who will speak to the student has a good level of conversational English.
  • NOT write the essay for the student, review or read it prior to submission.

Ready to help inspire the minds of tomorrow?

Fill out the Patient Group Pairing Form below for your chance to be paired with a student for 2022!

What is Expected of Students?


Timeline:
If you are submitting a form as a student, submissions will be open from the 5th October to the 9th of November.

 

Students who would like to be paired with a rare disease patient group will be expected to:

  • The student will prepare a series of questions prior to their interview.
  • They will arrange a time for the interview with the patient group in advance.
  • They will respect the views and experiences of the patient representatives.
  • They will agree to share an essay that features the disease of their paired patient organisation with that organisation after the competition winners are announced.
  • They will maintain confidentiality and not disclose any details that haven’t been agreed in advance with the person they are interviewing.
  • They will 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.
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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

“Working with a patient was definitely the most rewarding part of this essay. My eyes 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. It’s an experience unlike any other I have had at medical school so far!”

“It was an irreplaceable experience that gave me an opportunity to expand my medical education for the better.”

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Copyright © Medics4RareDiseases Ltd 2022
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