Savvy Cooperative has been explicitly using our platform in public support of #blacklivesmatter. While most people have been overwhelmingly positive about our stance, there has been some question as to whether we should be so forthright on the issue of calling out Black lives matter.

Inclusive innovations must include Black patient insights

Savvy is in the business of advocating for inclusive health innovations. Yes, in our work that frequently means inclusion within a variety of eligibility criteria, including age, gender, diagnosis, geography, health literacy, socioeconomic status, insurance type, treatments, and, of course, race and ethnicity. But to talk about inclusion of all of these aspects right now is the equivalent of saying “all lives matter.” All lives can’t matter until Black lives matter.

That’s why in the context of healthcare, we must also take this moment to assert that Black lives matter, and recognize and advocate that innovations won’t be inclusive until they have equitably engaged Black patients and and taken action to respond to the needs, priorities, and health disparities of Black communities.

Advocating for Black lives IS patient advocacy

So many patient advocates — myself included — are white. We have had our time, and we need to make even more space to make sure Black voices are heard.

Last night, the monthly #btsm brain tumor chat on Twitter took the month off in order to commit time to process current events and learn about the experiences of the Black community.

As Liz Salmi, one of the tweet chat organizers said, “listening to Black voices and educating myself to take anti-racist measures is continued education in patient advocacy.”

I encourage you to use your platforms and privilege to speak up, not just to be good allies in the movement — and certainly not be virtue signaling — but rather to actually create better health innovations and systems that improve health outcomes for Black patients.

Reasons why companies aren’t doing the work

Since helping companies gain diverse patient insights is what we all day, every day, I have heard every excuse, pushback, or redirection for why people don’t invest in doing the work of actually talking to patients. The most common reasons being that:

  • patient insights are looked at as nice-to-haves don’t have real value (educate yourself)
  • people think/say “but we are all patients” (get out of here with that “all lives matter” rhetoric)
  • teams just flat out don’t budget for it (plan better)

These reasons cannot and will not fly anymore.

Don’t ignore it. Budget for it.

You cannot post hashtags and retweet Black people on social media, and then look up from your phone and tell colleagues that getting patient input is not worth it or you don’t have funds allocated for it.

The time is now. I recognize the tide is turning and people and organizations are scrambling to figure out how to shift and respond to the current outcry.

But we must remember, this is not a zeitgeist, unfair treatment of African Americans is what their history was founded on. The least we can do is move swiftly now to educate ourselves and unlearn what we think we know in order to right this ship as fast as possible. That starts with listening.



We are doing our part to help. Tonight, Monday 6/8 at 5:30pm ET, we invite you to tune in for a live discussion on health equity and how to be a better ally to the Black community. The conversation will be moderated by Savvy co-owner and minority health & disability advocate, Tina Aswani Omprakash, and will feature three strong voices in the African American community:

  • Erron Maxey (International basketball player, Crohn’s disease advocate)
  • Tonya Hegamin (Author, professor and T1D & LGBTQIA+ advocate)
  • Larry Turner (Former Lakers player, current international basketball player)

Register to watch live or view the recording here.

Learn more about diversity, equity, and inclusion in healthcare

The education doesn’t stop there. We are committed to helping to be part of the solution, and will be bringing you more conversations and resources to discuss how to create more diversity, equity, and inclusion in healthcare in order to support the Black community.

Sign up for updates on this important topic.

Want to talk about other topics or ways to collaborate? Get in touch at

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 8, 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.