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Why Black patients need dedicated space to talk about racism | black Lives Matter | Savvy Cooperative | #AskPatients

Making white people feel safe to learn about Black lives

Yesterday we hosted a panel entitled Step in Our Shoes: A Discussion on How to a Better Ally to the Black Community.”

If you ask me, that’s a pretty safe title. Perhaps the panelists knew it might make it more disarming and accessible to non-Black viewers.

In the prep call, the speakers even suggested that we perhaps add a disclaimer to the registration page, which we did, to alert viewers that the conversation will be provocative and may be uncomfortable for some to hear.

DISCLAIMER: This conversation is meant to be uncomfortable while serving as educational and informative to bring forward greater acceptance and inclusion of the African American community.

My goodness, think about all that went into creating a “safe space” for white people to learn about Black lives in a 60-minute webinar. What if we gave the same consideration to create a safe environment for Black people to just live their lives?

Racism: not your typical healthcare focus group convo

I listened to incredible stories of the speakers, Erron Maxey, Tonya Hegamin, and Larry Turner. While I learned a great deal about their experiences, I know it only scratches the surface.

So much was covered, and I highly encourage you to go listen to the recording yourself. But there was one larger point that really stuck with me that I wanted to share with you today.

At one point the moderator, Tina Aswani Omprakash, asked the panelists “When did you first experienced racism?” I was struck by the bluntness of the question, one which we don’t hear asked head on in traditional patient forums.

I’ve run a lot of advisory boards, focus groups and in-depth interviews before, and never once did I sit down to talk talk about Crohn’s disease and ask the participants “when did you first experience racism?” And this is precisely why we need to have these discussions.

Creating space for uncensored discussion

Racism is a public health crisis, and affects someone’s health and well-being. So let’s not tip-toe around the issues, or we are missing so much about how racism deeply impacts someone from the earliest ages.

It’s one thing to talk about the large systemic health inequities of Black communities, but it’s another to learn about being called the N word on the playground, and trying to truly digest what that does to a young mind.

While ensuring that panels, focus groups and other mediums for patient insights are comprised of “diverse” participants is great in the context of asking for feedback on products or services, it will not capture these important conversations.

I recognize that if we don’t make space to talk with just Black patients about their specific experiences, then we lose out on so much that would never be touched upon if white people were mixed into the group.

We must make space for uncensored discussions on racism.

I am grateful for these speakers and look forward to creating more space to hear about the experiences of the Black community.

About Savvy Cooperative

Savvy Cooperative is the first and only patient-owned public benefit co-op. Savvy helps the healthcare industry create more patient-centered and inclusive products and solutions by providing a gig economy marketplace for patient insights. Companies and innovators can connect directly with diverse patients and consumers to participate in clinical, user-experience and market research opportunities, such as surveys, focus groups, user-testing, discussion boards and other co-design opportunities.

Using our unique co-op model, Savvy utilizes a unique peer-to-peer outreach model that facilitates recruitment of more diverse participants, empowers patients to use their health experiences to advance research and product development, and advocates that patients are fairly compensated for their contributions. Savvy’s award-winning co-op has been featured in FastCompany, TechCrunch, The Boston Globe, and named one of the 50 Most Daring Entrepreneurs of 2018 by Entrepreneur Magazine.

Jen Horonjeff
Post by Jen Horonjeff
June 9, 2020
Jen Horonjeff, PhD, is a life-long autoimmune disease patient and brain tumor survivor turned human factors engineer, academic, FDA advisor, and now the founder & CEO of Savvy Cooperative.