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Involving patients and carers in research

PPI is becoming an increasingly 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 the IN, and has made PPI a mandatory requirement for grant applicants.

Why is patient and public involvement (PPI) important?

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:

  • Helping improve 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 are sensitive to 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 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.

Patient and public involvement for brain tumour research through the IN

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 personal 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 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?

IN members come from across the UK and are either brain tumour patients or carers. To make sure as many people as possible can join the group (from different geographical locations and circumstances), the IN operates mostly digitally via email and a private Facebook group although IN members have attended conferences and joined steering groups of studies local to them.

The most common way the IN becomes involved in prospective grant applications is by reviewing a lay summary of the proposal and giving feedback pre-submission. This involves the researcher sending us a lay summary (around 500 words including introduction, simple methodology and objectives) and any accompanying questions they would like to ask the lay community. We then post the summary to our members along with any questions and get their feedback within a set period of time.

However, given that this type of involvement happens at the latter stages of an application’s development, we encourage patient involvement earlier in the process, if possible from the formulation of a research idea. If your application is early in its development, we can arrange a consultation with IN members – perhaps sending them a set of questions about any current themes you are exploring or dilemmas you may be facing at the initial stages, and getting their perspective.

IN involvement is not restricted or limited to the above processes. If you have an idea of how you want patients and carers involved in your project for the short, medium and long term, we are here to discuss it with you, and hopefully make it happen.

Contact the IN

If you are interested in involving patients and carers in your research contact us at involvement@thebraintumourcharity.org.

We will ask you the following questions to help guide your interaction with the IN:

  1. The ask – what kind of involvement do you need (e.g. survey, focus group, patient research partner)?
  2. Who you want involvement from (e.g. people living with, carers, people with specific tumour types)?
  3. How many people are you hoping to hear from?
  4. Time frame – is there a deadline you’re working towards? We’ll do our best to accommodate this wherever possible. Please try to get any requests to us before the second Thursday of each month, for inclusion in our regular communications.

The IN 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 IN 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 respected by the IN throughout the entire PPI process.