Tag: Patient involvement

Why good cancer research must have the patient at the centre

Kelly Gleason, CRUK Lead Nurse, explores the value of patient and public involvement in cancer research and how it can improve the quality and outcomes of research.

Patient and public involvement (PPI) is increasingly recognised as important. Funding bodies are asking for more and more from researchers in regard to patient and public involvement. They want to see evidence of authentic and ongoing relationships between researchers and the public that is informing what is being researched, how it is being researched and how findings are shared with the public. Funders want to see more co-creation between researchers and the public and for this to happen, researchers require help accessing larger patient networks and support in maintaining relationships with patients.

My journey with PPI at Imperial

I became involved in patient and public involvement almost a decade ago – it was a relatively novel concept back then. The need for cancer researchers to access patients to involve in their research was increasing. The Imperial Cancer Research UK Centre, where I work as a Lead Nurse, established a group of patients and members of the public for Imperial researchers to have easy access to the patient voice. The group served as a resource to researchers and inputted on everything from grant proposals to lay summaries. They helped us create a research culture at Imperial where patients were integral to what and how we carried out cancer research. (more…)

Using co-production to improve the way we talk about diabetes

Our medical students are using principles of co-production to improve their understanding of living with diabetes – those with a personal experience of diabetes are encouraged to take part. 

The practice and expectations of modern medicine have changed enormously over the past 20 years. The internet, social media and smartphones have transformed how we access knowledge and data and how we think about healthcare. Tomorrow’s doctors need to be equipped with the values and behaviours to serve our increasingly diverse population, recognise and respond to our global obligations and to flourish in a 24/7 culture where the pace of change can seem relentless.

The reimagined Imperial College School of Medicine’s undergraduate medical curriculum launched in September – this marked the first major curriculum review in the 20 years since today’s School was formed. As the leads of the Professional Values and Behaviours (PVB) domain, we were given the exciting opportunity to work with colleagues across the medical disciplines to rethink how and what we taught.

We wanted to design teaching that will help medical students harness their creativity to find solutions to complex problems and to nurture their resilience and adaptability. We also needed it to develop their ethical reasoning, sense of professional and moral identity, and for them to value team working and collaboration. We have aimed to create authentic, experiential learning opportunities that will support deeper learning and encourage students to see the relevance to their future practice. (more…)

An open letter to the participants of my Hepatitis C study

© Kotryna Zukauskaite

For World Hepatitis Day (28 July), Dr Philippa Pristerà shares an open letter to the people that she met and interviewed early last year as part of her research study exploring the experiences of people living with and accessing care for Hepatitis C, and their perspectives on cure.

Dear all,

I am writing to you because you took part in my interview-based study ‘Viewpoints from hepatitis C: accessing and experiencing cure’*. Some of you I met about a month before I gave birth to my daughter, others would have met my colleague Jane Bruton who kindly took over while I was on maternity leave. Since my return to work, I have spent my time reading over the interviews to see what key themes came through and would like to take this opportunity to update you.

I want to say thank you

Thank you for sharing your story; for sitting down with a complete stranger, a heavily pregnant one, to be interviewed about your life. To help me build the context around your experiences and better understand your story, you revealed a great deal about your expectations and your beliefs, your current and past behaviour and their consequences. I was struck by your openness, and so grateful for your trust. (more…)

Bringing patients together to tackle heart disease – the Heart Hive

Many researchers study a particular disease because they have a personal connection to someone who has been affected. For researcher Dr Nicky Whiffin, it happened in reverse.

I had been researching cardiomyopathies (diseases that affect the heart muscle) for a couple of years when my mum suddenly became very ill. Even walking up the stairs was a struggle, she had to pause halfway to catch her breath. Having just been through a very tough patch at work, it was put down to stress. I remember clearly what should have been an amazing trip to Paris in March 2016 to see England’s rugby team win the six nations grand slam – instead the trip was dominated by us all worrying about my mum’s illness. (more…)