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A patient’s perspective: “Research should be done with patients, not to or for them”

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by Holly Spencer | Personal stories

11 June 2024

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People at a party wearing party hats
Holly's friends threw her a surprise party when she found out she was in remission
This entry is part 3 of 3 in the series How can we share research together?

The Shock and Impact of a Cancer diagnosis

I was diagnosed with non-Hodgkin lymphoma, a type of blood cancer, in November 2021 when I was 30 years old. As you can imagine this was a huge shock – I didn’t have any symptoms apart from a lump in my groin, and at such a young age I never expected to be diagnosed with cancer.

Holly in a hospital gown wearing a mask
Holly in hospital for her treatment during the COVID pandemic

Although my treatment was short and relatively straightforward, the diagnosis had a huge impact on me mentally and I struggled to come to terms with life during and after cancer treatment.

My interest in PPI – personally and professionally

I have worked in the pharmaceutical industry for most of my career, initially in patient-reported outcomes research and more recently in healthcare communications, so I was aware of some ways in which patients could be involved in research. In fact, since my diagnosis, I have taken on a specialist role where I help pharmaceutical companies to look at patient experiences, and better understand what patients really want / need.

To help me process what I’d been through, I started to look into ways that I could contribute from the other side of the fence as a patient representative. I came across this opportunity via Cancer Research UK’s Patient Involvement network, and I have since been involved in several projects with Cancer Research UK and other organisations, including this one.

Taking part in this project

I enjoyed taking part in the project and working as a group to create something meaningful. I find it cathartic talking about my experience with people who understand what I’ve been through; it’s a way for me to reflect, process and make sense of what happened to me, as well as build resilience and face my fears.

Knowledge, even if it’s not specifically about my cancer type, is power as they say.

Holly ringing a bell in hospital
Holly ringing the bell on the day she finished treatment

I am very fearful when it comes to talking about my condition with my medical team. My head goes fuzzy and I can’t process the information at the time. But by talking about my experience, I have been able to build some confidence and talk more openly with my oncologist.

I regularly conduct co-creation type projects in my line of work, but I’d never taken part in something like this as a patient representative. The experience has given me valuable insight which I can apply in my working life, too!

I was pleasantly surprised by the researchers’ enthusiasm and interest in patient perspectives.

Patients are not always seen as equal stakeholders in research settings, and their involvement is sometimes seen as a tick box exercise, or is overlooked because it’s too expensive and takes too long. But Adam, Catarina and Lisa were genuinely interested in what the panel thought and created a safe space for everyone to share their views. They are clearly passionate about patient involvement, and this was really great to see.

Making research accessible

I read journal articles – in both a personal and a professional capacity – but scientific information can quickly become confusing if you’re not an expert in the subject matter, let alone a patient without any experience in interpreting this type of information.

Holly wearing a conference lanyard
Holly was invited to speak at a conference by Blood Cancer UK

Making research accessible is important because it’s not just scientists, doctors and other professionals who need to know about advances in cancer research; some patients will want/need to know this too, and they deserve to receive that information in a way that is accessible to them.

Research, at all stages, should be done with patients, not to or for them. If there is one thing I have learned in my own career in patient-focused research, it is that the things that patients consider to be important are often different to what is important to researchers, industry professionals and policy makers. It is essential to include patient perspectives, at the right time and in a meaningful way, if advances in cancer research are to serve their best interests.

What’s next?

It’s great that this project is not a one-off. I was keen to continue my involvement and have more conversations with researchers. I was really pleased to be named as a patient representative on a grant application Catarina submitted in 2023. We should find out soon if the application is successful. Hopefully it is, the project is 3 years long and I’m looking forward to getting stuck into this one right from the start!

Headshot of Holly

Holly Spencer

Holly is 33, lives in Manchester with her partner Ross, and works as a Patient Experience Strategist in the pharmaceutical industry. She was diagnosed with follicular lymphoma in November 2021 and was treated with radiotherapy at The Christie. She is now in remission and supports CRUK and other patient organisations with patient advocacy initiatives and other involvement activities.

Final thoughts from the PPI project co-ordinator, Lisa 

Holly’s experience really echoes what we heard from the whole group. We evaluated the project using short surveys both immediately after the three workshops and then again once we had finalised the output. Group members had time to reflect and provided lots of constructive feedback. Despite the time taken and some challenges we all felt this project was a huge success.  

When asked what their favourite part of the project was, one participant wrote: 

“I’m still amazed that we managed to condense a very complex scientific paper into an accessible information sheet, and that everyone stuck with the process even though it took much longer that we had thought – everyone remained focused on reaching a good outcome.” 

Another participant said: 

“All of it! Enjoyed being part of a team venture and my contribution being listened to” 

Before the initial exploratory workshop in March, we could never have imagined the conversations we would have, things we would all learn and what we would create together.  

Sharing this project is an opportunity to raise awareness of meaningful PPIE. We hope to encourage other researchers to work in similar ways and to work with patients to make their research as transparent and accessible as possible  

One participant summed up the whole project perfectly: 

“I just think this was a great initiative, ‘translating’ an entire research paper into an info sheet is not something I would have even considered possible. I’m very glad that we managed to have a successful outcome. I think a lot of research scientists will be surprised by this as well and may see opportunities for doing something similar” 

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