Patient and public involvement (PPI)
PPI is an extremely important factor in the review process of funding bodies. The Brain Tumour Charity is working for closer cooperation between the brain tumour patient and research communities through our involvement network, and we have made PPI a mandatory requirement for grant applicants.
The importance of PPI extends beyond just increasing the chances of submitting a strong application for funding. Depending on the role you give to members of the public and at which stages of your project’s life-cycle, their participation can support your work by:
- Improving the accessibility and clarity of language used to communicate your project to prospective participants, the community of beneficiaries and the general public.
- Ensuring that the methods proposed for the study keep in mind the circumstances of potential research participants.
- Assessing whether potential research outcomes are relevant and important to the target population and the public in general.
- Providing a different personal perspective – and one that perhaps eludes researchers and others working closely on the project.
Several funding bodies, such as the NIHR, CRUK and MRC ask grant applicants about their plans for PPI with an expectation that if they are not involving members of the public in the research then they need to have thought through why they have made this decision and explain the reasons. Should you require help from our involvement network, please complete the form found here or at the bottom of the page.
How our Involvement Network can help you
The Involvement Network (IN) is a group of brain tumour patients and carers from all over the UK who have expressed a strong interest in being involved in our cause, often with a special interest in research. For them, participation in your project, at any stage of its development and in any capacity, would mean using their own lived experience of this devastating disease for the greater good. Ways in which IN members could be involved in your research include but are not limited to:
- Reviewing the lay summary of your proposal (assessing methodology and objectives)
- Reviewing clinical trial patient materials for clarity and accessibility
- Joining a steering group
- Taking part in consultations
Whether you are looking for brain tumour patients and carers in general or a more specific group such as parents of children with a brain tumour or people affected by a high or low grade glioma, the IN can accommodate your needs accordingly.
For such a devastating disease, bringing together such a network is a difficult task. We considered trying to set up a network initially but this has been extremely difficult due to the health of the patients. We sincerely hope to continue engagement with the IN pre and post future grant awards.
Dr. Ruman Rahman, Assistant Professor in Molecular Neuro-Oncology, University of Nottingham
How do I approach the IN?
Please complete the form below to submit a request for the to the involvement network. Requests are to be submitted 3 weeks prior to the deadline to allow time for your request to be allocated and reviewed by appropriate IN members.