Patients and their loved ones are at the heart of everything we do at the Bone Cancer Research Trust. As part of our continued commitment to fund only the highest quality and patient relevant primary bone cancer research, we are delighted to announce the launch of the Patient and Public Involvement Panel (PPIP).

Researchers want to learn from those living with or caring for someone with primary bone cancer. These lived experiences can help to shape how future research is undertaken, and that, in the longer-term, can lead to better outcomes for future patients.

By establishing this new panel, we are bringing you, the people affected by primary bone cancer together with our fantastic research community to work in partnership, creating an invaluable link between the research and patient communities. The PPIP will help evaluate and communicate research ensuring that the research questions we ask, and the outcomes we achieve, truly matter to patients.

This exciting new volunteering opportunity is open to anyone with a lived experience of primary bone cancer: patients, family members and friends. By volunteering to join PPIP, you will be directly contributing to the research process by engaging with researchers to answer their questions and help them secure funding to continue their life-saving work. By donating your time, you will be ensuring that:

  • Researchers are asking the right research questions; questions that matter to patients and that will lead to better outcomes for those affected.
  • We fund the best, most relevant research which will make a huge difference to the lives of those living with and beyond primary bone cancer and improving the lives of future patients and their loved ones.
  • Researchers can communicate their work in plain English, so it is understandable to the public.

The PPIP will be at the centre of our vital work and have two main responsibilities:

  1. Consultation and Engagement. It is important that a patient’s perspective is included when researchers are developing their research projects. People with a lived experience of primary bone cancer are in the best position to help researchers understand the impact of their work and explain their projects in an accessible way. Researchers will be able to ask the PPIP for help to review and provide feedback on their research funding application before it is submitted and with writing their lay summaries. This will ensure that their goals are relevant to the primary bone cancer community and that they can communicate their research in plain English.
  2. Evaluation and Recommendation. When we receive applications for research funding, these are reviewed by scientific experts and our Independent Scientific Advisory Panel (ISAP) to ensure they are scientifically sound and have a good chance at improving outcomes for patients. Whilst we have always had a lay member on ISAP to represent patients, members of the PPIP will now have the chance to evaluate these applications. By giving feedback, you will be helping to ensure we fund research that is relevant and can make a difference to patients.
As our funding has become increasingly competitive, awarding grants is not as simple as asking ‘who is doing the best science?’, because all of our researchers are doing important work. Involving our patients in our research funding process will ensure that we focus our efforts on research that is most relevant and beneficial to patients. We are beyond excited to be taking this first step in our Patient and Public Involvement in research and hope many will apply to join PPIP.

- Dr Zoe Davison, Head of Research, Information & Support, Bone Cancer Research Trust

Applications are now open to join PPIP, for the full Voluntary Job Description and to apply, please click below.

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