Since its formation in August 2021, our Patient and Public Involvement Panel (PPIP) has continued to grow and evolve, providing a platform for the bone cancer community to have their say about research that matters to them.
Our PPIP has become an established source of expertise, with researchers both within and beyond the primary bone cancer community reaching out to seek the perspectives of patients and families.
This month marks a landmark moment as we welcome our fiftieth PPIP member, Tracey Goodship, to our ever-growing panel.
Tracey brings a breadth of expertise through her lived experience as an osteosarcoma patient. With a keen interest in research, Tracey shares what prompted her to join PPIP and what it means for her to be involved in this way...
It is January 2019. Dominating my thoughts was that in December of that year I'd be the big 5-0! Fifty sounded old to me. I really didn't like the thought of being 50. Whinge, whinge, whinge...
Flash forward to August 2019 when I was diagnosed with osteosarcoma in my right foot. All of a sudden fifty wasn't in my thoughts, it had been replaced by words like: cancer, hospital, surgery, chemotherapy, hair loss, fear, isolation, loss of freedom.
Treatment started, and I began thinking: 'I hope I live to be fifty. Fifty is young, not old.'
My cancer diagnosis really brought me back to earth with a bump. All those silly thoughts about fifty being a bad thing were replaced with 'I can't wait to be fifty.'
When Kathleen from the Bone Cancer Research Trust said I was the fiftieth PPIP member, I was thrilled, as fifty is now one of my favourite numbers!
Fifty symbolises that I survived bone cancer and gruelling chemotherapy and surgeries. Fifty symbolises how grateful I am to my body for coping with the treatments. And, most importantly, fifty symbolises that I have lived to be back amongst my friends and family.
Being the fiftieth PPIP member is an honour as it is an opportunity for me to give back to the charity that has helped me and supported me through my cancer journey. I hope my patient experience will help others through PPIP. My daughter blessed me with a granddaughter in 2023 - I feel like the luckiest person in the world to be in my fifties.
What is PPI?
Patient and public involvement, or 'PPI', ensures that patients and families have the opportunity to be actively involved in shaping research and guide the direction that it takes.
For researchers, this means taking a step back to consider the perspectives and priorities of those who have lived through the disease they are investigating.
What do members of PPIP get involved with?
Our PPIP members have the opportunity to share feedback on a wide range of research and help to shape proposals before they are submitted, and review applications — ultimately having an active role in our research funding decisions.
They also have the chance to get involved in wider activities, such as sharing feedback on clinical trial documents, supporting the development of research webinars, contributing towards the review of our information resources, and providing input to research projects conducted by medical students on placement with the Bone Cancer Research Trust.
You don't need any research or scientific background or previous experience to join PPIP, and opportunities are carefully matched to the lived experiences and opportunities of our members.
Your lived experiences and perspectives as members of the primary bone cancer community is the expertise we are seeking, and we are always welcoming new members!
If you would like to find out more about getting involved, please contact PPIP@bcrt.org.uk
To apply to become a member of our Patient & Public Involvement Panel, visit the link below: