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The impact of patient voices in research

Working for the Research team at Breast Cancer Now, part of my job is managing some of the scientific committees that give us strategic recommendations about the research we fund. Having left the laboratory a year and a half ago, I know first-hand how important funding research is.

Right now, Breast Cancer Now funds a staggering £25m of breast cancer research to help bring us one step closer toward our vision - that by 2050, everyone who develops breast cancer will live – and live well. You may wonder who has the task of providing advice and recommendations for investing such a vast amount of money!

The Science Strategy Committee

One of our advisory committees is the Science Strategy Committee. It’s made up of a collection of top scientists with different areas of expertise in breast cancer research. Some committee members come from the UK, and some are international, but all of them generously volunteer their time to provide recommendations to our Board of Trustees.

These scientific experts look at the collection of research projects and initiatives we fund as a charity and evaluate the progress and impact of our funded research. After all, Breast Cancer Now not only wants to fund world-class breast cancer research, but wants to ensure the research we fund is improving the lives of those affected or at risk of developing breast cancer. 

The Committee meets twice a year at our London office to review our funded research and our research strategy. These meetings help ensure Breast Cancer Now is funding the best breast cancer researchers and that the money we invest in research helps us achieve our ambitious vision.

Something was missing

We’re so fortunate to have such committed and engaged Committee members, but when I joined the team last year, I noticed there was something missing – a patient voice. So, the Research team got together and made a plan to formally recruit a Patient Representative for our Science Strategy Committee.

The Research team was excited about the prospect of having a new, permanent member of the Science Strategy Committee. I started the journey with an open call for applications, attempting to cast a wide net to reach as many interested people as possible. I also chatted with my colleagues in our Public Health team, knowing they had a plethora of experience working with Patient Representatives.

Using Breast Cancer Voices to advertise the opportunity was an obvious choice because I knew this engaged group of volunteers had a special interest in sharing their experience, and had the key skills and attributes we were looking for in a Patient Representative.

Finding our representative

I was thrilled when I received over 25 expressions of interest for the position. Those that were interested were from a huge range of professional expertise, but all were so open and honest when sharing their experience of breast cancer. I was both humbled and inspired by each journey shared and their dedication to using their challenging experiences to help others facing this devastating disease. The Research team and I went back and forth and ended up inviting five people to interview for the position.

Before the interviews, we thought we had a firm grasp on how difficult it would be to pick only one Patient Representative. In hindsight, we didn’t have a clue how difficult it would be. After five stellar interviews with Professor Adrian Harris, Chair of the Science Strategy Committee, and Dr Simon Vincent, Director of Research at Breast Cancer Now, in May 2018 we offered the opportunity to Dr Anna Sarphie. Anna has a wealth of experience in various patient representative roles, a calm confidence we knew would be well-suited for the role, and as a bonus, extensive experience in the world of scientific research!

Advertising this opportunity with Breast Cancer Voices was a driving factor to successful recruitment. It helped us reach an engaged group of people with personal experience of breast cancer. Approximately one-quarter of applicants ended up being panel members, and the selected Patient Representative was also a panel member! Even better than expected, many of those that weren’t selected for this particular role ended up joining the Insight and Experience panel afterwards. 

The moment of truth – Anna’s first meeting

It’s been a joy working with Anna, as we both navigate this new territory for this strategic committee.

We spent a few months preparing for her first Science Strategy Committee meeting; we started with a training pack that explained the wider work of the charity and what she could expect from her role as a Patient Representative. We also had plenty of video calls, discussing content from previous meetings and paperwork for her first meeting. Leading up to the first meeting, we did a run-through of what she could expect on the day and arranged for her to meet the Committee members the evening before her first meeting over dinner. This dinner was the first time we met face-to-face – and of course when this happened, we both felt like we were old friends!

Naturally, there were some nerves before Anna’s first meeting. It’s not easy to voice your opinions in a room of expert scientists, but Anna quickly found her confidence. She did a brilliant job of bringing the perspective of patients into the meeting’s discussions and her thoughtful, valuable contributions shed light on key realities for breast cancer patients. 

We’re continuing to learn and improve on the experience from Anna’s first Science Strategy Committee meeting, and are looking forward to the next one. I’m thankful to Breast Cancer Voices for helping in the recruitment for this role and look forward to more opportunities to work together in the future. And of course, the biggest thanks goes to all those so willing to share their experiences to help improve the lives of those affected by breast cancer. 

If you've been personally affected by breast cancer, you can find out about opportunities to use your voice to shape our work in research and other areas by joining our Breast Cancer Voices community. Our monthly bulletin shares all the latest research and involvement opportunities, as well as voices from across our community who are united by this common goal.

Breast Cancer Voices

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