July 18 is Black Leaders Awareness Day, a time to celebrate Black excellence and leadership. To mark the occasion we spoke with Sigourney Bell, a third-year PHD candidate at the CRUK Cambridge Institute and co-Founder of Black in Cancer.
Here’s the second part of that conversation in which we spoke about what Black in Cancer hopes to achieve and what barriers exist that they hope to help the community overcome.
Click here to read the first part of our conversation, in which we spoke about Sigourney’s experience as a brain tumour researcher.
What is Black in Cancer and what does the organisation hope to achieve?
Black in Cancer is a non-profit organisation with a two-pronged mission – increase the number of Black cancer researchers and bring more awareness about cancer to Black communities.
We’re tackling the first issue through what we call The Black in Cancer Pipeline Programme (BICPP), which focuses on mentorship, providing opportunities and supporting Black people throughout the research pipeline. This includes everything from encouraging more young students to pursue careers in cancer research to helping promising researchers transition into PhDs and supporting young postdoctoral researchers who are already out there doing brilliant work.
The other initiative we have is our Cancer Awareness project, which really aligns with what The Brain Tumour Charity is doing with the #BetterSafeThanTumour campaign.
We want to make sure that people from Black communities are informed about their healthcare decisions and feel empowered to take action. It’s not about telling people what they need to do or what treatment they have to have, it’s about making sure they understand their options and giving them the choice. Too often we hear of people who feel like treatment is just something that’s being done to them, but it should be a journey that they have an active part in.
There are also lots of myths about cancer that we want to dispel in Black communities, which is why we hold events where people can ask us any questions they have about cancer, it’s treatments and the research that’s being done.
After one of those events someone said to me, “I just didn’t think that Black people could get cancer because I’ve never seen us in any of the adverts – I didn’t think it was something that affected us!”
That’s the power of representation and a great example of why there’s still work to be done to make sure these awareness campaigns work for everyone.
How can organisations like The Brain Tumour Charity make sure they’re doing everything they can to engage with Black communities with campaigns like #BetterSafeThanTumour?
Putting the information out there is great and, ultimately, we save lives by doing that, but it’s also about making sure the information infiltrates all communities as best as you can.
We all tend to more readily accept information from people who look like us, so I think part of this is making sure you’re bringing that information to Black communities and having advocates who understand their experiences.
Another element is reaching into those spaces where Black communities already are so they can share that information themselves. You should be asking yourself if there are community groups you can work with or if you can partner with other cancer organisations who are more successful at reaching different communities – for example, Cancer Black Care or BME Cancer.
How can organisations address the underrepresentation of Black people in clinical trials?
I think for a long time there was an assumption that Black people didn’t want to be involved in clinical trials but what a lot of recent research has found is that actually they’re really keen on being involved. It’s not that they’re a challenging group to reach, it’s just often they’re either not being asked or being asked in the wrong way.
So the first step is just making sure these questions are being asked – “Would you like to be involved in these clinical trials that you’re eligible for? Would you like to donate tumour samples to research?”
The Brain Tumour Charity is actually in a really powerful position when it comes to solving this because you could make it a condition of your grants that when a research project or clinical trial is being designed it needs to reflect the diverse population of the UK.
It’s not enough to just recruit 400 people for a trial and hope for the best. If you’re recruiting 400 people than a certain percentage should be Black, a certain percentage should be Asian and so on. That would force clinicians to actively recruit a diverse mix of people.
And the same goes for research in the lab, you need to make sure researchers are collecting samples from a diverse mix of people. You may find things happening at a genetic level that affects different communities differently. There’s a whole avenue you can go down looking at not only whether there are differences in tumour development and growth, but also looking at whether different drugs or therapies affect different communities differently.
Finally, there’s a lot that can be done to support those who don’t currently feel comfortable being part of a clinical trial. Yes, some Black people are inherent mistrust of the medical community because of things that have happened in the past, but nobody really wants to feel like a guinea pig!
Are there resources you can create to help people understand what a clinical trial is and how much time is spent getting the research to that point? Do you have a diverse mix of people sharing their stories about being part of a clinical trial? Are you explaining the importance of clinical trials to making progress and reassuring people that if the trial isn’t providing any discernible benefit they can revert back to the usual standard care?
How can we better support Black people who are affected by a brain tumour?
Partnering with organisations that already exist is always the best bet because the groundwork has already been done and 95% of the time they’re run by somebody with first-hand experience of the disease – which is so important.
Where those organisations don’t already exist, you should be asking what you can do to support people in Black communities to create that space – whether that’s Black patient advocates or those personally affected by brain tumours.
That could literally be providing physical space for them or sharing resources to make it easier for them to develop that support network – especially if they’ve not taken on such a role before.
What barriers prevent more young Black people pursuing careers in brain tumour research?
There are a number of challenges along the way and it starts right from childhood. Representation is so important, just in terms of being able to see somebody who looks like you doing a job.
There are so many brilliant, inquisitive minds who may have already shied away from following an interest in science because they don’t see scientists who look like them. They aren’t necessarily being discouraged from pursuing that interest but they feel more encouraged to pursue other subjects because that’s where they see themselves represented.
So, even before you get to undergraduate level, you have fewer Black people pursuing science degrees but then once they get to university there’s an added disparity in grades that Black student achieve compared to students from other backgrounds.
Despite entering university with the same grades and the projection being that if you have those grades you’ll end up with a first or 2:1, that journey just isn’t linear for Black students. Whether that’s due to not feeling like they belong or not having the same level of support – whatever the issue may be – it’s another barrier they face.
There’s yet another barrier when it comes to PhD applications, whether that’s systemic or unconscious bias going against you or even just the cost of the application. For example, it was £50 per application for me to apply for my PhD at Cambridge and for some people that’s just not doable – especially as there’s no guarantee you’ll be successful and putting together an application can take months’ of work.
Going back to the point about visibility, this has continued to be an issue for me throughout my career. I’ve been in brain cancer research for three years now and I’ve only ever met one other Black woman with a PhD who worked in this field. In fact, she was the first Black woman I’d ever met with a PhD, which is hard to fathom considering I’d already done my undergraduate degree and worked for three pharmaceutical companies before we met.
And when you look around and don’t see anybody else that looks like you in your field, you do start to wonder whether you’re making the right decision. Does the brain tumour research field look this way for a reason? Am I going to struggle to secure funding to pursue my own research? Is it going to be too hard to keep fighting for my place in the field alongside everything else I want to do – whether with Black in Cancer or starting a family?
Black in Cancer has achieved so much in such a short time, for example you partnered with CRUK to deliver a mentorship scheme for 15 students in the UK and 15 students in the US. What’s been your greatest achievement so far?
The Black in Cancer Postdoctoral Fellowship has been a real highlight. It’s amazing that we’ve been able to support three Black cancer researchers to finish their PhDs and continue doing incredible work. We’ve secured each of them $75,000 a year for three years to continue their work and if they transition into a tenure track position that goes up to $100,000.
But, honestly, what’s more of an achievement for me is that people have been comfortable emailing us for support after they or someone they know has received a diagnosis and knowing that we’re able to help them. That’s more valuable than anything.
If we’re able to educate people about cancer and encourage them to go to a doctor to get something checked out, we’ve achieved something worthwhile – whether that actually results in an earlier diagnosis and successful treatment or just giving peace of mind because it’s been ruled out.
How can individuals support Black in Cancer and the work you’re doing?
We’ve always been committed to this not being a flash in the pan, something that seems great at the time and looks good on our CVs but doesn’t create any meaningful change. We want Black in Cancer to have a long-lasting impact on the world until we just aren’t needed as an organisation – then I can focus 100% on my research.
We’re a non-profit like The Brain Tumour Charity, so we’re always looking for more people who want to volunteer to get involved with what we’re doing. We’re always welcome new ideas about how we can deliver our Cancer Awareness project more accessible and find creative, inventive new ways of getting our information through to the community – we always welcome ideas about how we can do any of that.
Obviously, none of the work we do comes without some form of funding. We’re not supported by big venture capital money, we get small donations from people who support us to continue what we do because they believe in it – so that’s another way people can support us directly through our website.
We’re always looking to collaborate with other organisations and think about how we can support each other to achieve our goals – that’s really helpful too.
Click here to read the first part of our conversation with Sigourney Bell, in which we spoke about her experiences as a brain tumour researcher.