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My journey into patient and public involvement

Written by Beth Giddins, Monitoring, Evaluation and Learning Manager, NIHR (Southampton), School of Healthcare Enterprise and Innovation, University of Southampton

We know that research cannot be effectively delivered without involving patients and the public. Whether it is a clinical trial offering patients a new treatment, providing a blood sample to monitor a participant’s condition or completing a quality-of-life questionnaire to help better understand patients’ well-being. The principle ‘no decision about me, without me’ is an excellent reminder of why we do research. With this blog, I would love to inspire researchers to adopt a more patient-centred approach in research. I want to show the positive impact that involving patients and public in research can have on research and its outputs.

Starting my journey into patient and public involvement 

I am interested in patients’ own lived experiences and their narratives through storytelling. So, when studying for my Masters in Research degree in 2018-2021, I decided to undertake a research study that involved interviewing cancer patients about their own experiences of using talking therapies while undergoing treatment.  

During the early stages of this study, I had the opportunity to join a local cancer support group meeting attended by patients and their families. I knew I wanted to explore something related to their experiences and observing the conversations in this group would point me in the right direction of what topic to focus on. 

 It was insightful and eye-opening to listen to their experiences. For example, an individual who had undergone radiotherapy for their throat cancer explained how much they missed eating crusty bread. The impact of treatment meant they were unable to produce saliva and therefore affected their eating habits. Another individual also described how someone praised them for their weight loss, when in fact this was nothing to celebrate as it was due to the impact of their cancer treatment which had left them physically and mentally exhausted. They explained how much they missed their body before being diagnosed with cancer; their new body was not an accomplishment or a reflection of their identity. These conversations have stayed with me after all these years, providing a real and unique insight into what patients go through.  

The research journals I read as part of my literature review said that the impact of cancer treatments would drastically affect patients’ quality of life so I had some understanding of what patients would be going through. But to see for myself the real people who were going through this and listening to their stories served as a reminder of why we do research.  

Shaping research outputs with patients

I returned to the local cancer support group nearly two years after attending my first meeting to share the results of the study; a booklet with mindfulness exercises for patients. I asked them to review it before going to print.

One piece of feedback which stood out was that the colour scheme in the booklet reminded one patient of a cancer charity. They explained they found the colours triggering; they were similar to those on the various pamphlets they were given as soon as they were diagnosed. It reminded them how overwhelming things were for them at that time. The colour scheme was immediately changed following this meeting. Again, this has stayed with me as it is another valuable insight into what patients go through. As someone who has not experienced this, I had no idea a colour scheme would have such a powerful effect.

Closing the feedback loop

This experience has also made me think about research transparency practices. Research participants and public contributors deserve to know what happens to the data they provide and the impact of their contributions on a research study. This could include writing a letter to participants directly thanking them for their involvement or discussing the findings at a group meeting. This will vary depending on the complexity of the research study and the type of involvement, however taking the time to feed results back to the people who have contributed to the study is worthwhile. This experience has also made me feel grateful for the role of public contributors as they take the time to listen to researchers’ ideas, offer a range of perspectives and enhance the quality of research we do. It ultimately inspired me to become a public contributor myself at a local Clinical Trials Unit specialising in cancer trials, as I have previously worked on cancer trials and seen how cancer impacts people’s lives.

If you are a student undertaking research and are struggling to see the value of, or are daunted by, involving patients and the public in your research then always remember that it can lead to better research and outcomes as well as be a rewarding experience for you. Good luck!

Do you want to find out more about patient and public involvement and engagement? 

In our new online course ‘Nothing about us without us,’ you can learn about what makes good patient and public involvement and engagement in health and social care research. Register your place on the course today!