Despite being experts in primary bone cancer and the main benefactors of medical research, patients and their friends and families are rarely involved in the research process.
It is important that research is shaped by people living with primary bone cancer and the people who support them throughout their journey. We have made it our goal to break down the barriers between our research and patient communities to bring people with a lived experience of primary bone cancer to the heart of our research funding. With this in mind, we are absolutely delighted to announce our Patient and Public Involvement Panel (PPIP). Below Jenny Wick, current member of PPIP shares more about what it means to her to be part of the panel.
Being involved in PPIP has meant that I can use my knowledge and experience, as well as improve my understanding of osteosarcoma, to help source beneficial research in the treatment of this devastating disease. I feel I'm doing something positive to instigate change that will help other families directly.
For the Bone Cancer Research Trust, public and patient involvement (PPI) means bringing patients and their support networks to the very heart of our research funding process. Our aim is to ensure that every project funded by the our charity is carried out with the primary bone cancer community, rather than “to”, “about” or “for” them. To achieve this, we are committed to facilitating direct communication between primary bone cancer researchers and PPIP members. Our hope is that by creating this new channel for discussion, our supporters can have open conversations with researchers, feel empowered to influence the direction of projects and feel a sense of ownership and pride in the scientific achievements we make together.
This is your chance to make your voice heard and ensure the research that we fund truly matters to patients!
What support is available for PPIP members?
We are here to support you every step of the way on this new adventure. Even before you submit an application we are here to answer any questions or concerns you might have about joining the panel. Just drop us an email at PPIP@bcrt.org.uk and we will do our best to help however we can.
Once you have submitted your application, we will arrange a training session either 1:1 or with a small group. The session will be lead by Tobi, our Senior Research and Advocacy Officer accompanied by Dr Phil Green, a GP and patient advocate. During the session we will give you background on how we fund research at the Bone Cancer Research Trust, the responsibilities of a PPIP member and training to support you as you start this exciting journey with us. Click below to access the volunteer application form and once completed, please send it to PPIP@bcrt.org.uk and one of our team will get in touch.
As a researcher, PPIP can significantly benefit your application by helping you gain a unique insight into what it is like to live with primary bone cancer. Dr Darrell Green, primary bone cancer researcher and Bone Cancer Research Trust, Trustee, shares:
We may play different roles in the research process but we are one community. It’s important that we all feel ownership and be proud of the scientific achievements that we make together. It’s superb that the creation of a PPIP panel will formally recognise this; putting the PBC community (i.e. scientists, patients, families, friends) together in the drawing room when designing the studies of the future.
In the short time since PPIP was established the panel has already had an incredible impact. The panel have provided invaluable feedback to our first ever Early Career Fellowship applicants by engaging with applicans online to discuss the lay summaries - an essential part of the application.
We have written a PPI Guide for Researchers to help you start on your journey to involving the primary bone cancer patient community in your research grant application. If you have any questions about the guide or more general queries, please do not hesitate to contact our research team at firstname.lastname@example.org who can support you.
What support can we offer you?
Whatever your research project, cure, cause or early diagnosis, we can support you to involve people affected by primary bone cancer in a meaningful way. Please note that we are eager to support all researchers applying for grants to conduct primary bone cancer research regardless of which funding body they are applying to. We have a dedicated panel of volunteers who are ready and keen to work with you.
We can help in:
- Identifying and prioritising your research question
- Writing your plain English summary
- Designing your study
- Evaluating study documents (information sheets, consent forms etc.)
- Managing the research (as part of a steering group or advisory committee)
- Undertaking the research
- Disseminating the research
- Evaluating impact
When you decide you are ready to bring PPIP into your project planning and applications, please download and complete the support request form.
Once we have received your application, a member of the team will reach out to you to discuss the next step, this will vary depending on the support you request from PPIP.
PPIP are standing by, ready to help you with your research however they can. The research team at the Bone Cancer Research Trust can not wait to bring these new collaborations together!