To deliver world-class research into brain tumours in the UK, scientists need reliable access to the resources, tools and expertise that enable them to pursue innovative ideas and ensure their work reflects the needs of the brain tumour community.
Since 2022, we have partnered with our sister charity brainstrust, investing in its Patient Research Involvement Movement (PRIME) to strengthen patient and public involvement in research into brain tumours.
PRIME ensures that patients and carers, with lived experience of brain tumours and their treatment, help shape the design of research studies. Their expertise helps make research more relevant, supportive and responsive to the real needs of those affected by the disease.
As part of our Research Strategy 2026–2031, we are building on successful partnerships such as PRIME and supporting other vital research infrastructure that enables discoveries to move more quickly from the laboratory to the people who need them most.
Dr Helen Bulbeck, Co-founder and Director of Services and Policy at brainstrust, shares why she created PRIME, what the partnership with Brain Tumour Research has made possible, and where the movement goes next.
What is PRIME, and why did it come about?
I've spent 20 years sitting alongside people with a brain tumour and those who care for them. My late husband and I founded brainstrust in 2006, after our daughter was diagnosed with a brain tumour, and from the very beginning our work has been about one thing: making sure nobody feels lost, alone or afraid on this pathway. What struck me, year after year, was how often research was happening around our community rather than with it. Studies were designed, questions were set and trials were launched and the people who would live with the consequences were rarely in the room.
That was the gap PRIME was built to close. Patients and caregivers are experts about themselves; researchers are experts about the science. Both are needed for research to deliver, but the distance between the two communities has always been too wide. When we launched PRIME, our Patient Research Involvement MovEment, in April 2021, the ambition was simple: bring patients closer to research, and research closer to patients.
Paediatric Brain Tumour Symposium
If I'm describing PRIME to someone new, I say this: it's the bridge between people living with a brain tumour and the people researching one. We connect research teams with a trained, supported community of patients and caregivers who help shape studies from the first idea to the final results, so the research questions, the study design, the recruitment strategy, the participant information, the way findings are shared. And we do it across every tumour type, every stage of the pathway and every phase of research.
The biggest challenge in establishing PRIME wasn't finding willing patients – our community has always been generous with its insight. It was changing culture. For too long, patient involvement was treated as a box to tick a week, or even the night, before a grant deadline. We needed to show researchers that involving patients early isn't a hurdle; it's what makes a study stronger, more fundable and more likely to answer a question that matters. We also had to insist that lived experience is expertise, and that it should be valued and budgeted for, like any other expertise on a research team.
What makes PRIME unique is that it's a movement, not a transaction. Our research partners complete a training programme, so they bring rigour as well as lived experience. We act as a critical friend to research teams: supportive, invested in their success, but honest when something won't work for patients. And we don't gatekeep so whatever the scale, focus or stage of a project, if patient insight would make it better, we want to help.
Why does investment in Public and Patient Involvement and Engagement (PPIE) matter as much as investment in the lab? Because brilliant science that asks the wrong question, can't recruit, or produces results patients can't use is science that fails the very people it's meant to serve. Patient involvement de-risks research. It makes every pound of research funding work harder. In a disease area as challenging as brain tumours, we cannot afford research that doesn't deliver.
The importance of Brain Tumour Research funding
Without Brain Tumour Research, PRIME would not be what it is today. Funding from Brain Tumour Research has taken PRIME from a promising idea, run on goodwill and stretched capacity, and turned it into a sustainable, professional service with national and international reach.
Brainstrust Brain Tumour Workshop
This support has enabled us to build the infrastructure that quality involvement depends on: dedicated patient involvement staff, the training programme that develops our research partners, and the capacity to be present where decisions are made – at international brain tumour conferences, at the Brain Tumour Research Novel Therapeutics Accelerator, where PRIME was chosen to be the voice of the patient community, and at the table with the European Organisation for Research and Treatment of Cancer (EORTC) and Genomics England. It has allowed us to say yes to researchers keeping patients' insight within reach, and to keep involvement accessible, flexible and genuinely open to everyone.
Without it, PRIME would have stayed small and reactive. We could not have trained research partners to the standard we insist on, sustained support across dozens of concurrent projects, or built the evidence base that now shapes how PPIE is done in neuro-oncology. The partnership amplified our voice and deepened our impact; it is a genuine collaboration, and it works.
And the impact speaks for itself. In the four years since launch, PRIME has helped attract more than £31 million of investment in research into brain tumours, supported more than 80 projects across every phase, from multinational drug trials to quality-of-life research and liquid biopsy studies, built a community of more than 200 advocates supported by 10 trained research partners, and contributed to more than 20 publications.
But what matters most to me isn’t £31 million. It's the researcher who told us that PRIME's input enabled one of their patients to become a parent, something they hadn't believed was possible. It’s the researcher who changed the primary endpoint from overall survival to quality of life when he spoke to patients. It's the community members who tell us that being involved has left them feeling less isolated, more confident and better equipped to navigate their own care. That's what shaped research looks like.
Looking ahead
My long-term vision is a world in which PRIME's approach isn't remarkable at all – where no brain tumour study is designed, funded or delivered without patients helping to shape it at every step, and where PPIE is understood to be as essential to research as statistics or ethics. Research that delivers, because patients helped shape it.
Over the next five years, working with Brain Tumour Research, we want to support more than 80 concurrent research projects and help influence a further £75 million of investment in research into brain tumours. We'll grow our community to 250 advocates with 35 trained research partners, publish a PPIE Best Practice Framework so that what we've learned can raise standards everywhere, deepen our presence in early-phase research where patient insight can change the trajectory of a treatment and host an inaugural International PPIE Summit. We're also building towards greater financial sustainability, so that PRIME is not just impactful and accessible, but built to last.
And for the patient community, this means something simple but profound: research is no longer done to them, or for them, but with them. This is what hope looks like in practice – knowing that the research shaping your future has been shaped by people who've walked in your shoes, and that your voice, your experience and your insight can change what's possible for everyone who comes after you.
None of this happens without partnership. Brain Tumour Research understood, early, that funding the patient voice is funding better science. Together, we're proving that the fastest route to better outcomes for people with a brain tumour runs directly through the people themselves.
Your support helps drive this progress forward. Consider making a one-off donation or a monthly gift today.
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