Our Patient Advisory Group needs you!

Our Patient Advisory Group needs you!

Tue 05 October

We're looking for new members to join our PAG, giving feedback to help improve our support services.
Our Patient Advisory Group (PAG) members represent the views and experiences of people affected by brain tumours. They might be young people or adults; a patient, a carer or someone who has sadly lost a loved one to a brain tumour.

You don't need any experience or knowledge of medical research in order to join. We just want to hear your views!

If you join our PAG you can get involved as little or as much as you like and help to influence real change in our services. You'll also have the opportunity to support clinicians and researchers by giving feedback on potential new clinical trials.

How you can help

There are various ways to get involved, which might include:
  • answering online surveys and polls
  • attending a focus group (online or face-to-face)
  • reading our leaflets and new patient information
  • feeding back on the design of clinical trials and other external opportunities
  • giving feedback in person or over the phone
Why should I join?

Some of our current PAG members gave us a little insight into why they decided to take part: 
“I am passionate about improving access, enabling patient centred care, supporting innovation and safe practice and being an advocate for the child/parent voice”
“I want my experience to be heard to help others in the future”
“Being part of the Patient Advisory Group means I get the opportunity to be involved in giving feedback and ideas in an easy way. I do the bits I want to do and feel good for helping.”
“It is so easy to be involved, YBTC make it simple and don’t ask too much of me. I feel like I am really giving back.”

What we've been up to
Recent examples of what our PAG members have been involved in include:
  • A questionnaire for the National Institute for Health Research (NIHR) Surgical MedTech Cooperative to help improve tasters and educational sessions for members of the public who may not be familiar with how health research works.
  • A survey for the neuro-oncology team in Sheffield, who had developed a poster and cartoon animation to inform patients, loved ones and the public about donating brain tumour tissue for research. The feedback received has meant the poster was redesigned and simplified.
  • A survey about the support services we offer here at YBTC and how this can be improved; new services including drop-in caf├ęs, wellbeing walks and Friends Get-togethers were developed as a result.
Upcoming opportunities for our PAG members include:
  • A focus group to help look at the design of a clinical trial at Leeds General Infirmary which will assess the safest dosing regime of a medication called Perphenazine to treat patients with high-grade primary brain tumours. 
  • A focus group to help improve the design of a clinical trial at Leeds General infirmary that will look at personalising radiotherapy treatments for high grade glioma patients.
If the Patient Advisory Group sounds like something you'd like to get involved with, register your interest by clicking here. We'd love to have you as part of the group.
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Email: info@yorksbtc.org.uk 

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