Helen White & Danni Elster, Experts by Experience (Episode 48) | Helen and Danni are using their experiences to help improve womb cancer research
For this episode of the Research Adjacent podcast Sarah is talking to Helen White and Danni Elster. They both volunteer for Peaches Womb Cancer Trust. Helen is the Patient Voices Lead and Danni is a member of the Patient Voices group. They both got involved with the charity after receiving treatment for womb cancer.
Peaches Womb Cancer Trust is a relatively new charity, despite the fact that womb cancer is the most common gynaecological cancer affecting 10,000 women every year. Peaches Trust raises funds for research into womb cancer and also provides information and support.
From one voice to Patient Voices
Helen’s research participation journey started after she was diagnosed with womb cancer and then Lynch syndrome – an inherited condition which increases the risk of several cancers (and shared with previous guest Sam Alexandra Rose). She was invited to join the 100,000 Genomes Project and then offered to be part of their participant panel. She is still on that participant panel now and has been involved with a lot of other PPI (patient and public involvement) initiatives since. In 2021 Helen was invited to become the Patient Voices lead for the newly established Peaches Trust and quickly realised that she needed to recruit other people to help. The group now has nearly 90 members.
“Peaches Patient Voices came about because of a discussion between myself and some researchers, where we identified that I was pretty much the only voice out there with womb cancer and that we needed to open this up to a much, much broader audience and to reflect the whole diversity of using different experiences of cancer from very early stage to late stage, different ages, ethnicity, the whole spectrum of diversity.” – Helen
Danni was one of the first people to sign up. Having gone through treatment she wanted to use that experience to do something which felt useful.
“What I was looking for was a way to use my experience in a really practical way. I don’t believe that everything happens for a reason but I do believe that when you go through experiences you can do something with it. And it doesn’t justify you ever getting cancer but it means well I’ve got it, I’m still here to tell the tale, what can I do with the fact that I’ve lived it?” – Danni
Helping researchers do better
As Helen and Danni explain the Peaches Trust Patient Voices Group get involved in all kinds of research projects. This ranges from participating in research to reviewing lay summaries and grant applications to being part of a project management team. Helen receives requests from researchers and then invites and manages group members contributions. Both Helen and Danni have seen the impact that their contributions can make.
“I’ve heard many times oh, that’s really good. We never thought of that. Well of course not because you haven’t walked in these shoes and so that you’ve got people that have walked in the shoes. And so our contribution is really valid.” – Danni
Danni explains how a research team was persuaded to remove the mandatory requirement for all research participants to take a pregnancy test. To the researchers this was just another check box on a form. But for women who have had a hysterectomy this test is not only irrelevant, but also potentially very insensitive.
“You really need to tread very carefully, because you won’t get people taking part in your research if you don’t consider those things. So this is all about how to get people involved in the research, and at a very vulnerable time in their life. How to make them realize that it’s a good thing to do, that it’s going to help other people, it may not necessarily help you, but it will help other people.” – Danni
Finding comfort in shared experiences
The Patient Voices group isn’t specifically a support group but Helen has noticed that participants find sharing their experiences has been validating and bonding experience.
“Being able to share your experience with somebody else with womb cancer, while you’re delivering information to the researcher, has been so beneficial because most of us have never met another person with womb cancer and some kind of magic happens actually when we’re in the room together.” – Helen
Making space for patient involvement
Although Danni’s experiences have all been very positive, Helen has found some situations frustrating, particularly when researchers don’t give enough time or space for patient involvement.
“If I had a magic wand, I would want to see patient and public involvement being more embedded, more routine part of the norm of research rather than, in some cases, it being a tick box exercise to get the grant application in.” – Helen
But demand for patient involvement is growing, so if you or someone you know has been affected by womb cancer do contact Helen to find out more about joining the group.
Find out more
- Connect with Helen via LinkedIn or email
- Find out about Peaches Trust and Peaches Trust Patient Voices
Theme music by Lemon Music Studios from Pixabay
