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, our Patient and Public Involvement Panel (PPIP) was established in 2021 and now comprises close to 60 members, all bringing diverse lived experiences of a wide range of primary bone cancers and tumours. 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 those directly affected by primary bone cancer. Whether you are a current patient, former patient, parent, partner, family member or friend, we want to be guided by your perspective.
Members of the The Bone Cancer Research Trust's PPI Panel engage with researchers to discuss their proposals and undertake lay reviews of research applications.
We are committed to funding research in a fair and transparent manner, supporting research of the highest quality and most likely to succeed. To do this, we must ensure that those involved in funding decisions do so in an independent manner and do not have conflicts of interest that might see them benefit personally or academically from a funding decision.
Therefore, we have developed a conflict-of-interest policy to maintain our position as a transparent funder and to protect those who freely provide their time to our charity from any accusations of bias.
The Bone Cancer Research Trust lay review/ PPIP Conflict of interest policy can be found here.
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 choose to submit a short application, we are here to answer any questions or concerns you might have about joining the panel. Just drop us an email at [email protected] and we will do our best to help however we can.
Once you have submitted your application, our Research & Engagement Officer, Kathleen, will arrange an informal 1:1 training session with you. During the session, you will have the chance to hear about how we fund research at the Bone Cancer Research Trust, discuss the role of a PPIP member, and receive some training to support you as you start this exciting journey with us. There will also be plenty of time for you to ask any questions you might have, whether about the research we fund or the opportunities available to our valued panel members.
To request an application form or to find out more, please contact [email protected]
We would be delighted to hear from you!
For Researchers
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 applicants 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 [email protected] 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!
Association of Medical Research Charities: position statement on the importance of involvement in medical research
The Association of Medical Research Charities (AMRC) recently shone a spotlight on the importance of involvement in medical research, outlining the vital role of patients and the public in identifying key priorities and directing funding towards high-quality research which will make a difference to people’s lives.
As a member of the AMRC, we fully support this position statement. This means that we are committed to working in active partnership with the primary bone cancer community, supporting their involvement throughout various stages of the research process and continually striving to further this involvement.
Like the AMRC, we believe that meaningful involvement is the key to achieving meaningful research outcomes.
Their recent report highlights the wide-ranging approaches medical research charities, like BCRT, are taking to facilitate involvement in the research they fund.
You can read the AMRC position statement in full here, alongside their further information on Public Involvement in medical research.