Patient and public involvement (PPI) is becoming an increasingly important criterion in the review process of funding bodies. The Brain Tumour Charity, in its efforts to enhance closer cooperation between the patient and research communities, has launched the Research Involvement Network - a unique group dedicated to facilitating PPI for brain tumour research.
It is becoming widely accepted that 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:
Several funding bodies, such as the NIHR, CRUK and The Brain Tumour Charity ask grant applicants about their plans for public involvement 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.
The Research Involvement Network (RIN) is a group of brain tumour patients and carers from all over the UK who have expressed a strong interest in being involved in research. For them, participation in your project, at any stage of its development and in any capacity, would mean using their own personal experience of this devastating disease for the greater good. Ways in which RIN members could be involved in your research include but are not limited to:
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 RIN can accommodate your needs accordingly. The RIN operates mainly through a closed Facebook group and email, making it easy to reach all members simultaneously, no matter where they are geographically located. However if you require people from a certain geographical area (to join a steering group for example) that can also be arranged.
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 RIN pre and post future grant awards.
If you are interested in involving patients and carers in your research contact us at email@example.com or firstname.lastname@example.org.
The RIN is an immensely valuable resource which can enhance the scientific work you are already working on. Contact us to discuss how you want to involve RIN members and we will do our best to accommodate your needs. In the past, for the purpose of assisting researchers and to help facilitate PPI we have written lay summaries (based on technical summaries of research proposals) for feedback by the group and have designed online surveys (based on the researcher requirements) to collect the feedback.
Any confidentiality requirements relating to the development, submission and operation of research projects and their outcomes will be honoured by the RIN throughout the entire PPI process.