Have you been at risk of fracture?

What’s the project?

The research project is concerned with the identification and treatment of vertebrae at risk of fracture following the spread of secondary cancer (metastases) to the spinal bones, and how bone fractures can be prevented.

The researchers want to recruit two patient advocates to sit on their management board – this could be anyone who has been at risk of fracture in relation to their breast cancer diagnosis – and particularly people living with spinal bone metastases and their informal carers (friend or family member).

Why do you want me to be involved?

Your views and insights will bring to the discussions an understanding of the needs of patients and their caregivers, as the research around spinal metastases is developed. This will help guide the best approaches in the treatment of this significant health concern.

What will you ask me to do?

The selected patient/carer advocate will attend management board meetings of one hour per month, with up to an hour preparation time, reading documents provided. The position could be continued until 2027.

You will contribute to discussions about the research and how it is carried out. Your input will be particularly important in areas of direct relevance to patients, their experience and needs, and how research participants will be recruited. Support will be provided to enable you to contribute fully.

The meetings will take place via Zoom/Teams and a participation fee of £30 for attendance at each management board meeting will be paid to you.

Who can take part?

Patients with lived experience of breast cancer in the last 10 years. Persons who are currently living with spinal metastases are particularly welcome. Caregivers (close friend of family member) of people with metastatic bone disease are also welcome to apply.

No in-depth knowledge of research or science is required, just an understanding of the experience and needs of people at risk of bone fracture, and the ability to communicate these during discussions. 

How do I get involved?

To express your interest in one of the two positions, please email Richard Hall at r.m.hall@leeds.ac.uk outlining why you are interested in the project, the experience you feel you would contribute to discussions, and any skills or experience you may bring to the role. Please also confirm you are able to meet the time commitment for at least a year as far as is within your control (although we understand that things can change in relation to your health, so please don’t let that be a barrier).

Your submission will only be used to help select suitable patient advocates, which will be based on the experiences you can bring to the board. You may be invited for an informal chat in order to make the final selection. All other responses will be deleted within two months of the first meeting. Read the University of Leeds’s Data Protection Code of Practice.