“Setting the table” for Patient and Survivor Expertise
As a community health educator and researcher, I’ve come across the paths of many resilient and wise women of color on my journey to understanding what is most important in the realm of breast cancer support, care, and research. The work I do involves research, outreach, and engagement in hopes to address cancer-health disparities involved with women of color. I've learned to engage these communities of women with a sense of humility, authenticity, and take opportunities to learn.
In my approach, I've found wisdom and a wealth of information from the most special of women, in the most special of places.
There are online communities of patients, community partnerships, researchers, and advocates. We as a clinical or research community need to recognize the wealth of information that the patients we serve have to offer.
I’ve also encountered many strong and supportive women of color in my work. I remember during a very enlightening lunch that I had with a young woman she said: "I came into cancer research the easy way...by getting diagnosed with cancer."
This resonates with me because, when it comes to looking at the disparities or issues that women of color face with the burden of breast cancer, we must remember that we need to have everyone at the table!
And I do mean everyone at the table!
In the realm of breast cancer research, I've heard women of color state: "because they wouldn't give us a seat at the table, we just made our own." I love this statement. It's empowering and demonstrates a strong effort on the part of women of color to create a space for themselves in research, education, and support.
But perhaps they shouldn’t have to create that space for themselves. Perhaps the research community should have a seat at your tables instead.
There shouldn’t be a need to create your own.
Not every woman’s expertise and knowledge may come from research, viewing bio-markers under microscopes, or "examining the heterogeneity of a certain mutation of BRCA1 or BRCA2 genes." There’s much to be said about the experience and issues of equity when we look at how women of color are treated in the exam rooms, or why women of color aren't approached as much to participate in clinical trials?
These are patient experiences that teach us important lessons about equity and glaring disparities.
And what about other relevant issues?
What does it mean for a woman to come to terms with the "new normal" for her body and lifestyle after her cancer treatments and/or surgeries?
Part of my job is to find these solutions. It is to examine why these situations exist and what we can do to help. As women of color, each of you can relate to these issues and support each other as a strong community.
To me, this means that somewhere among all of you, a solution lies.
Much of the framework of research and health systems merely reflect clinically focused values held by health-care professionals rather than outcomes that matter to patients, according to researchers at Health Expectations.
We must do more to recognize patient value, especially when addressing the inequities that exist among women of color.
We all know the issues.
We all know the incidence and rates among breast cancer for black women are higher than that of white women—40% higher actually (CDC, 2018).
We all ask “Why?” and get to work, trying to find ways to reduce that number and reduce disparities.
But there's more to it than just the stats, and the scientific community doing the research alone.
Let’s have more patient contribution.
Let's have discussions with these women and gain the complete picture.
Let's gather more information on their experiences and bring them all to the table in a more collaborative effort.
Just imagine you’re at that one symposium, in discussion, where doctors or researchers are theorizing and showing graphics about the inequities and disparities among women of color.
How many people at that podium even look like you?
Or is there some part (in the very back of your mind) that says sarcastically: “I’m so glad this doctor is such an expert on the black woman experience of cancer and telling me about myself.”
It’s not that the doctor isn’t qualified, but it would be nice to have some “perspective” right? How about a woman of color there to share their personal experience with cancer and the real effects that it’s had on their lives?
Maybe there is someone in the crowd who needs that story.
Maybe there's a woman who needs to know what she’s up against.
Maybe she needs to hear about experiences with those microaggressions you experienced from the nurses or doctors when you went to have that lump examined, and you felt like they judged you differently because of the shade of your skin—just a little bit.
But, we can’t stop there. You are more than capable of just bringing stories to the table.
Your experiences make you more than just “storytellers.” It makes you experts in your own right. It’s not only your valuable knowledge that we need, but you research, organize, support each other, and most importantly, you lead. We value what you have to offer (or we should), and we should make more of an effort to have you more present.
We need to tap into that wealth of knowledge that are women of color, especially if we are to even begin to address what we term as health inequities and disparities.
After all, you live it. Each day.
So, the next time you think that there’s no seat at the table for you, I say you just go in there anyways, flip that table… toss those chairs around, and make everybody set a new table that includes you to start with!
No need to create your own.
We need to make room for YOU!
Meet the Breast Cancer Baddie Champion
Dante’ Morehead, MPH, CHE is a community health educator/researcher for the Fred Hutch/University of Washington Cancer Consortium and The Office of Community Outreach and Engagement. His work specializes in cancer-health disparities and primarily focuses on African-American communities and communities of color in Washington State. When he isn’t engaging with communities or doing disparities research, he’s spending time indulging in desserts, watching sports (Chicago Bears fan!), or trying to potty train his 3-year old son, Grayson.