(P 196) ESTABLISHING THE BONE CANCER RESEARCH TRUST'S PATIENT & PUBLIC INVOLVEMENT PANEL

Objective: The primary bone cancer community face a range of challenges, largely relating to the rarity and complexity of this disease, alongside the scarcity of research funding. This means that they are uniquely placed to identify key research priorities and guide high-quality, patient-centred research.
Within a recent survey of our stakeholders, 91% of respondents acknowledged the importance of patient and public involvement (PPI) in research. Despite this, opportunities for members of the primary bone cancer community to be meaningfully involved in research have historically been lacking.
For the Bone Cancer Research Trust, PPI means ensuring that patients and their support networks are at the very heart of our research funding processes and, ultimately, gives them a voice when it comes to shaping the research that matters to them.
In 2021, we set out to establish a diverse and representative panel, encompassing lived experiences from right across the primary bone cancer community. Since then, the Patient & Public Involvement Panel (PPIP) has steadily grown, now comprising 50 members, including current and former patients, as well as parents, other family members and friends. Their lived experiences span a breadth of primary bone cancers and tumours, from the most common to some of the rarest.

Methods: BCRT aimed to establish a representative Patient & Public Involvement Panel (PPIP), drawing experiences from across the PBC community, to do so, we undertook a period of research to determine best practices across the medical research charitable sector in parallel with a stakeholder consultation to determine how we could most effectively embed PPI withing our research funding framework.
We developed all the necessary documentation, training and support mechanisms to recruit and mentor our members, so their life experiences could inform and shape future research.
Panel members were recruited by an open invitation which was shared by social media. They are recruited as volunteers supported by character references.
They receive dedicated training on our research practices, lay review processes and general patient advocacy.
Panel members have ethe opportunity to:
• Engage in consultation with researchers to shape proposals for submission to BCRT and other funding organisations.
• Review documentations for proposed clinical trials.
• Conduct lay reviews for research funding submitted to BCRT.
• Shape BCRT #s research strategy.
• Review and develop information materials.
• Engage with other relevant activities to shape bone sarcoma research and patientcare.

Results: Currently the PPIP comprises 5 members, including current (28%) and former (32%) patients, parents (28%), family & friends (12%). Members’ experiences span a breadth of primary bone cancers & tumours, encompassing osteosarcoma (n=19), Ewing sarcoma (n=12), chondrosarcoma (n=10), chordoma (n=2), adamantinoma (n=3), giant cell tumour (n=3) and other (n=1).
To date, 25 members have taken part in pre-application meetings, whilst 22 have completed lay reviews. Collectively, the PPIP has supported the development and review of 19 project applications, leading to approximately £2.8m of primary bone cancer research investment.
Researcher feedback highlights the importance of PPI in contextualising their research, whilst PPIP members value the direct impact of their experiences on future research.

Conclusion: A crucial measure of impact across all our PPI activities is the perceived benefit and value for our panel members, who generously share their time and expertise in support of primary bone cancer research. We endeavour to provide meaningful opportunities for involvement, tailoring to members’ interests and experiences.
We will continue to champion patient-centred research by facilitating PPI for PBC researchers. Measuring the impact of involvement is an important future consideration as we seek to expand the remit of the panel, looking to draw on lived experiences at all stages of the research cycle.