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Partners in crime: When patients become partners in research

Arshiya reports on an event she recently attended at Addenbrookes Hospital in Cambridge, held by Mr Mike Hart, a neurosurgery registrar.

Our research communications officer, Arshiya Merchant, reports from an Addenbrooke engagement event

Recently, I attended a patient engagement event at Addenbrooke’s Hospital in Cambridge held by Mr Mike Hart (pictured), a neurosurgery registrar and also currently working towards his PhD. He was a previous recipient of a Quality of Life research grant from The Brain Tumour Charity and used this event to bring together patients (and their carers) who participated in the study.

Patients on this study were asked to perform tasks on a computer tablet while undergoing brain surgery. The information collected allowed Mike and his team to map how the brain is connected around the tumour, with the ultimate aim of minimising detrimental effects of surgery.

The event was an opportunity for the research team, including Mike’s neurosurgical colleagues, Mr Thomas Santarius and Mr Stephen Price, to engage with all the patients and their friends and families and thank them for their contributions. The research team also presented the study’s interim results, showcasing some amazing advances in technology, as well as 3D printed brain models (pictured).

The clinicians and researchers each took turns to speak about different aspects of the project including what happens when recruiting a patient, during their surgery, and their follow-up through recovery.

It was great to hear about and see the collaboration between various individuals, who are experts in their fields, working to achieve the common goal of improving the quality of survival for affected individuals.

The presentations were followed by discussion allowing the attendees to gain further insight into the study by asking (some really challenging) questions and have a hands-on demonstration of some of the technology used in the study.

As a research communications officer, it was a valuable learning opportunity for me to be able to hear about the findings and impact of the study directly from the researchers. Hearing about the study from the researcher’s perspective allowed a more in-depth understanding of the different aspects of the study.

But perhaps my favourite moment of the afternoon came towards the end of the event, when a young lady referred to her clinician, Mr Thomas Santarius as her best friend and he returned the sentiment with equal enthusiasm.

It was incredible to see the bond between them and made me really think about the relationship between a patient and their clinician. They are partners: each fighting the same battle in their own way.

Their interaction highlighted the importance of facilitating such an event, as it created a space that provided patients an opportunity to ask questions and engage in meaningful conversation.

It also reminded me about the power of placing patients at the heart of research. When patients and researchers become partners, it creates a dynamic process that allows research to flourish.

But why is a partnership important? Because it implies equal standing.

A partnership allows patients, carers, and the wider population to be active members of research rather than the ‘subjects’ of research. It allows a patient’s voice to be heard and provides unique insight into an individual’s experience of their own health and wellbeing.

This insight allows researchers to address patient needs as identified by the patient themselves, thereby enhancing the quality and impact of research to find a cure.

If you or anyone you know wants to take on a more active role in research, you can join BRIAN (the Brain tumouR Information and Analysis Network) and/or the Research Involvement Network (RIN).