Ever since the Brain Tumour Charity began funding research, patients and carers have been a central element of the peer review process. However, the charity felt more could be done, and a decision was made to form a group of patients and carers dedicated to patient and public involvement, the Research Involvement Network (RIN). Constantinos Chrysaphinis, Patient Involvement and Projects Officer of the Brain Tumour Charity spoke to AMRC about the importance of patient and public involvement and the workings of the RIN.
Brain tumours are the biggest cancer killer of children and adults under 40. In the UK, more than 55,000 people are living with a brain tumour; most have a reduced quality of life due to a range of debilitating symptoms. Whilst survival has doubled across all cancers, survival rates for brain tumours have improved little for adults in over 40 years. The Brain Tumour Charity’s mission is to change this; they are determined and passionate about transforming outcomes and improving the quality of life for those affected.
How was the RIN set up?
In 2015, the charity set up the Research Involvement Network, a group of brain tumour patients and carers who are interested in using their own personal experience of brain tumours to aid research.
“It was born out of the Brain Tumour Charity’s long standing commitment to raising patient/carer voice within the research community.”
“There was a genuine desire by members of the patient community to share their experience of this disease for the advancement of research and to help create a better future for themselves and others diagnosed with brain tumours.”
“The charity already had contacts within the research community and the patient community: all we had to do was make sure the word spread out in both communities, that we recruited a sufficient number of patients and carers, and that researchers would start coming to them with their enquiries.”
Why is patient and public involvement important?
“Patient and public involvement is vital for all disease areas but especially for the more complex ones such as brain tumours.”
“Most people are caught off-guard by their diagnosis and go through hospital appointments and treatment feeling understandably overwhelmed and powerless. Patient and public involvement puts the patient and carer back in the driving seat, empowering them to use their personal experiences to inform research and ultimately benefit those will receive a similar diagnosis in the future.”
“Moreover, as important as it might be, scientific knowledge cannot substitute the personal experience of having to live and cope with a life-changing disease.”
“Having patients and carers involved throughout the duration of a scientific study, from the development of a research idea to its implementation, can ensure that every action is aligned with the needs of those it seeks to benefit.”
How does the RIN work?
“We have a permanent page on our website dedicated to explaining what the Research Involvement Network is and we have been promoting the RIN through social media, our e-newsletters and our publications.”
“It is easy for a patient or carer to apply. All they need to do is fill in an application form located at the bottom of our RIN page on our website. Successful applicants are then sent a welcome email with more details. Once someone becomes a member, they are added to the group’s mailing list and they also have the option of joining the Research Involvement Network closed Facebook group.”
“Every time there is a new involvement opportunity members are notified via email and there is also a post on the closed Facebook group.”
“Now researchers know that if they want to involve brain tumour patients and carers in their work, they can do so easily by contacting the Research Involvement Network. In the last quarter of 2016 we had double the number of researchers engaging with the network compared to the same period last year. “
What impact is the RIN having?
“Before the establishment of the Research Involvement Network, researchers found it very difficult to get feedback from a large enough number of brain tumour patients.”
For such a devastating disease, bringing together such a network is a difficult task. We considered trying to set up a network initially by asking our own glioblastoma patients/carers but this has been extremely difficult due to the health of the patients.” Clinical Researcher
“Now we are seeing researchers engaging with the network before applying for Brain Tumour Charity grants as well as grants and fellowships funded by CRUK and the NIHR. This is evidence that the Research Involvement Network’s influence within the scientific community is growing.”
“For patients and carers, it has created an avenue through which they can get informed about the very latest ideas in brain tumour research. In most cases, members evaluate research approaches and ideas which are completely novel. Being able to express an opinion on these novel ideas and play a part in their development empowers patients and carers and gives them hope for the future.”
I’m encouraged to see that comments I have made have been listened to and shaped this project… these kinds of things keep me going” Patient
“People who hadn’t been in touch with the charity before are joining the Research Involvement Network. This shows that RIN is satisfying a demand for patient and public involvement.”
What are the charity’s plans for the RIN?
“One of the main objectives is to keep growing sustainably. Brain tumours are a very heterogeneous disease and affect every person differently. For this reason, the more patients and carers we have as members of the Research Involvement Network, the richer the information it will be able to provide to researchers.”
“We also want to work on ways of maximising the impact the Research Involvement Network has on the work of researchers. At the moment, many researchers look at patient and public involvement as a secondary activity. This is evident from the fact that they engage with the Research Involvement Network once they have already formulated their proposal. We would like to see more researchers using patient and public involvement from the moment they start formulating their idea, methodology and research objectives.”
“Finally, we are working on ways of giving more back to members. Witnessing their commitment and dedication to the cause is truly inspiring and we want to make sure members get more out of the group. We are currently looking at organising lab tours for members of the Research Involvement Network so they can see the work being done by researchers up close.”
Were there any challenges setting up the RIN?
“I would say the biggest challenge was to find effective and non-intrusive ways of measuring how the Research Involvement Network performs. As time has passed we have found better ways of doing this and are still improving in this area.”
“For example, in cases where a researcher wants feedback on their research idea or proposal, instead of having members send their feedback straight to the researcher’s email address, we have used an online survey platform to collect feedback. This has allowed for more orderly feedback collection and delivery but has also allowed us to measure the number of people submitting feedback and their background (e.g. high grade patient, low grade patient or carer).”
What advice would you give to others thinking of setting up a similar programme?
“The most important thing is to have the patient community’s needs in mind when setting up a patient and public involvement group.”
“For example, when we were setting up the Research Involvement Network most other patient and public involvement groups met only physically over a set period of time. We knew that this model would not work for our community. People affected by brain tumours can lose their driving licence, suffer from fatigue or have physical disabilities all of which would make it hard for them to travel to meetings. Furthermore, we are a UK-wide charity and physical meetings wouldn’t make it easy for people in more remote areas to take part.”
“Based on these considerations and to make it as easy as possible for patients to take part, we decided to make the group a digital network. This approach has benefited us in many ways such as giving us the ability to deliver patient feedback under tight deadlines.”
“The other piece of advice I would give is to engage with funding bodies, let them know the group exists, and ask them to signpost prospective applicants to the group. Funding bodies can motivate and incentivise researchers to seek patient and public involvement by incorporating it in their list of criteria.”
“In our case, being the largest dedicated funding body for research into brain tumours has allowed us to require evidence of patient and public involvement from anyone looking to submit an application. As a consequence, a lot of the researchers applying for The Brain Tumour Charity’s grants are engaging with members of the Research Involvement Network and getting their input before submitting their proposal.”