What is your research about?  

My research aims to better understand how personalised care and support planning is coproduced in cancer care. To achieve this, I’m using an intervention called the Holistic Needs Assessment (or HNA), as a case study, to explore personalised care and support planning in action.   

One in two of us will experience cancer in our lifetime. Because of advances in prevention, early diagnosis and treatment, survival rates are increasing and for more and more people, cancer is a condition that people recover from, or live with long-term.  

The experience of readjusting life to manage this new context of cancer and recovery is a time of psychological adjustment. Even when people are disease-free, they often talk about ‘life after cancer’, because the experience of having had cancer has changed them as a person. My research focuses on the experience of living with and beyond cancer and aims to improve the experiences of care, quality of life and health outcomes for people who live with cancer. Personalised care and support planning (like the HNA) offers a way to support people to coproduce health and manage the impact of their cancer. The aim of my study is to improve this area of healthcare.  

How has EBCD played a role in this work?  

Experience-Based Co-Design is an important methodology that has helped me to think about how we make decisions for co-design. I trained in EBCD several years ago and it has informed my work and helped to bring about important changes in personalised cancer care services. I also extended the method by blending video-reflexive ethnography, that is, video footage of practice in real-time and reflexive sessions with patients, clinicians and teams – edited into the EBCD trigger films. 

What have the outcomes been from your work?  

The co-design work has resulted in significant changes to clinical practice and policy development in cancer services. 

I worked with patients and clinicians to unpick what was working and what could be improved for personalised care and support planning. We conducted iterative co-design workshops across three different NHS sites to prototype improvements.  

The findings led us to re-think how personalised support care planning is offered. Some patients thought the offer could be improved – it was too jargon-y, patients didn’t understand what the intervention was about, and didn’t know if it was for them. Clinicians talk about processes like ‘holistic’ and ‘assessment’ and it wasn’t always clear to patients what this meant. 

So we changed some of the language around the purpose of personalised care and support planning, and who it is for – so that it made sense to everyone.    

We also thought about how we can make the offer more accessible. People get a lot of paper when they’re diagnosed with cancer. Participants in the co-design workshop wanted something different so we co-designed an animation and an infographic to explain the care on offer. 

Patients and clinicians explained that the timing of the offer wasn’t always right for them, so the co-designed resources were also developed provide a nudge further down the line. Patients wanted to know the HNA is available but to be able to access it in their own time. Clinicians also identified that a poster would be a good way to remind them to keep the conversation open. 

Another output that we co-designed was a clinician conversation guide on what a good personalised care conversation looks like. Ilustrated with patient stories, we created ‘6 steps to supportive conversations’ which is being shared widely with cancer teams in the UK. 

Finally we co-designed a blueprint for what HNA transformation might look like in the future. This has been shared with the NHS England  personalised care team and informed the recent 10 year cancer plan for England.  

What drew you to EBCD as a methodology to support this work?  

I have a clinical background in Occupational Therapy. I worked clinically for many years before I took the step into research. The OT mindset is very much about collaboration and coproduction, helping people to participate in health and healthcare, and being inclusive. I wanted to bring that way of thinking into my research.  

The great thing about EBCD is that it is a participatory method. It provides an opportunity to bring lots of different stakeholders together so you can share different types of knowledge, and you can understand the picture from different points of view.  

It’s also about action – it leads to change.  

What was your experience of EBCD training? 

I trained on an open EBCD course with a group of other people who were thinking about coproduction in their own work. I found it useful to meet others and talk about their EBCD projects, and to hear from the trainers about how it is used in practice. Since doing the training I’ve gone back to the online toolkit many times, which I’ve found really helpful. There are also lots of resources and references for you to be able to check out other studies that have used EBCD in your clinical area.  

While developing my research proposal and considering the study design, I spoke with clinicians and patients about introducing the EBCD process into the work, and they were very supportive. I think this helped to prepare the ground for the project.  

I joined the Picker EBCD Community of Practice in 2022 to support work on this project. The main benefit of this is that you make useful contacts in the community. From my point of view it’s an opportunity to test out your ideas. There are so many ways you can conduct an EBCD project. Sometimes there are complexities, such as issues like gaining ethical approval or finding a way to carry out the trigger films, so it’s good to talk about these and learn how other people have got round any difficulties. Hearing about what has worked for other people may give ideas for how to run your project better.  

Most of all, it’s a safe space to talk and an opportunity to share your work with critical friends. Everyone involved is approachable and friendly. 

What would be your advice for anyone thinking about EBCD training now?  

In my role at the NIHR Research Support Service I often talk to researchers who plan to use EBCD. I always encourage people to cost in training at the outset as a part of the project training plan. And I advise people to join the community of practice.