Opening up research involvement to more voices

As part of this amazing event, Bal – a Voice and patient advocate – shared her experience of working with researchers, making an impact in research, and why it’s so important for people from diverse communities to have a voice too.

Can you tell us a bit about yourself and your relationship with Breast Cancer Now?

I was diagnosed with stage three breast cancer in August 2015 following a routine medical check-up. It was HER+ with lymph node involvement. My cancer was aggressive, so I had surgery soon after my diagnosis. Three weeks after my first surgery, the pathology report showed that there was lymph node involvement, so I had to go in for more surgery. A few weeks after that, I began eight months of chemotherapy. Then I had 15 sessions of radiotherapy to make sure they’d caught any nasties that were still hiding away. 

Breast Cancer Now supported me throughout my treatment and beyond, by providing vital services, be it virtually or at their face-to-face workshops, that helped me move forward to live well and beyond my cancer diagnosis. I am forever grateful to them for their continuous support and care.

How did you develop an interest in breast cancer research and involvement?

After I went back to work, one day someone came up to me and asked if I’d go and speak with a lady who’d just been diagnosed, and the story went from there. I thought 'I need to do more. I just want things to be better for other patients', so that’s how I came into contact with Breast Cancer Now.

I’ve been involved in all kinds of different things, but I’m very interested in taking part in breast cancer research. It’s important to me that my lived experience with breast cancer helps to inform the future care of women like me. I want to make sure that the outcomes of research are more relevant and useful for end-users, by influencing the design, delivery, and dissemination of information and, in the long run, leading to better services and care.

What sort of things have you been involved in and what's it like working with researchers?

I’ve been involved in research studies looking at how quality of life and resilience can be improved. I’m also a committee member of the NHS Cancer Improvements & Collaboration projects. This is a national level committee, and it was an experience that really opened my eyes to how much is going on behind the scenes that the public do not see.

I think it’s absolutely fantastic working with researchers. It's great how they're so eager to share their findings and the learnings that they're working on. Sometimes the language and the abbreviations they use so naturally, you just need to challenge and say 'Can you explain in lay people's terms so that I can understand?' I say, don't be scared just because you're a patient, because the researchers want you – they want to listen and to act on what you say.

Why do you think it’s important to have more voices represented, especially from different ethnic groups?

One of the reasons I became a patient advocate is because we need to listen to the voice of under-represented communities in line with other, wider communities as well, because our voice matters. I think the more voices you have, and the more variation you have from different communities, the more you ensure that research represents the whole spectrum of people affected by this disease. Only from this - using a broad range of voices - can an accurate picture be formed.

I've worked in the corporate world, but I never thought in a million years I would sit and do this for Breast Cancer Now. But I want to do it for my community - for the wider community - because a collective voice is a very powerful voice.

Our hope is that this event will have answered some of the key questions about what it means to be a patient advocate and given people more confidence to get involved in the future. We’ll be sharing more updates from the day in due course, but if you’re interested in scientific research and want to know more, please don’t hesitate to get in touch at voices@breastcancernow.org.