Why healthcare innovators need to start with the basics—their communities 

Hello and welcome to Modern CEO! I’m Stephanie Mehta, CEO and chief content officer of Mansueto Ventures. Each week this newsletter explores inclusive approaches to leadership drawn from conversations with executives and entrepreneurs, and from the pages of Inc. and Fast Company. If you received this newsletter from a friend, you can sign up to get it yourself every Monday morning.

For all the talk about the rise of “the user”—user-generated content, user-centered design—it is rare that users (aka patients) are actively consulted in health innovations, especially in communities that lack access to basic healthcare. “Innovation must be designed with and for the people it serves, harnessing the insights of those who best understand their communities’ needs,” Jennifer Gardy, deputy director, global health, at the Gates Foundation, told me recently.

Imperfect pipe dreams

Gardy says she understands why global health advocates, often optimists who want to improve outcomes, can sometimes engage “shiny thing-itis,” as she calls it. “We’ll see this cool new technology and we’ll say, ‘This is so cool. If we build it, they will come,’” she says. Unfortunately, without community input, those innovations often fall short.

In 2011, the foundation initiated a program called the Reinvent the Toilet Challenge. Some 3.5 billion people worldwide lack access to safe sanitation, which puts them at risk for diseases such as diarrhea, typhoid, and cholera. (To draw attention to the challenge, foundation cofounder Bill Gates went on “The Tonight Show Starring Jimmy Fallon” and convinced the host to drink water made from treated sewage water.) During field testing of the earliest designs, research teams heard from women and girls in their communities about their health, safety, and privacy. They highlighted poor lighting and lack of menstrual products.

As a result of this and other projects, the foundation launched a gender integration effort. Now all foundation teams are trained in applying a gender lens to their work. “Whether it’s developing a team-level guiding strategy that includes gender considerations or filling out a gender intentionality assessment for every investment we make, thinking about the impact (and unintended consequences) on communities—especially women and girls—is now baked into the fabric of how we operate as a foundation,” Gardy tells me in an email exchange.

Gardy also shared some of these insights during a Fast Company panel produced in partnership with the Gates Foundation during the CES tech trade show earlier this month. The Gates Foundation, whose mission is “to create a world where every person has an opportunity to live a healthy, productive life,” participated in CES to showcase some of the health technologies it has supported.

Innovation through community

The call for more community input in innovation was echoed by panelists Laura Adams, senior advisor at the National Academy of Medicine, and Greg Simon, president of Simonovation, a science and tech policy consulting firm. “Digital health is about giving people access to the information that they ought to have anyway,” says Simon. “The gripe I have with the digital medical community is that they stopped talking to patients,” he adds, and instead collect data without understanding the human context.

That’s a shame, as research suggests patients can be an asset in health innovation. A 2015 study of patients with rare diseases found that more than half had developed their own solutions for coping with their diseases, with 8% coming up with tactics that were truly novel.

Adams also notes that if patients aren’t consulted on health innovation, they’ll likely take matters into their own hands, adding: “I think the sleeping giant is AI (artificial intelligence). We have no idea how far AI will take the empowered patient.” She cited the example of a frustrated woman whose young son saw multiple physicians, none of whom could diagnose the cause of his chronic pain. She supplied ChatGPT with information from her son’s MRI reports and other health data. The chatbot suggested a diagnosis of tethered cord syndrome, which was confirmed by a neurosurgeon.

And as generative AI tools become an increasingly important part of the health landscape, Gardy urges innovators to tap into communities to make sure they have representative data as they build their models. “You have to have lived experience part of your development process, whether it’s an AI-based tool or a better community toilet,” she says.

I asked Gardy what CEOs and other leaders can do to support the mission to create a world where every person can live a healthy, productive life. She replied: “I hope more business leaders, corporations, and tech developers embrace health innovation for all as a smart investment and seize the opportunity to improve lives and livelihoods around the world.

How does your company support health innovation?

Does your company support health innovation? If so, how do you engage communities to ensure that your product meets the needs of patients? Send your comments to me at [email protected]. I’d like to share some of your insights in a future newsletter.

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