Humans have been collecting health data for thousands of years. And now, with our advanced technologies, we give up valuable data about our health and habits without even realizing it. Throughout history, there has been an overrepresentation of health data for men and an underrepresentation of women and people of color. The lack of diversity has resulted in health disparities across communities and ineffective medical solutions. Unethical data collection has also created chronic mistrust in the healthcare industry.

On January 26th, Dezbee McDaniel, Kasem Rodriguez Mohsen, and Bilal Soylu discussed this concept of data poverty. Moderated by Dr. Shante Williams, the panelists shared fascinating insights on educating and incentivizing people to share their data and how medical institutions can compensate them fairly.

First Things First: Data Poverty is Deeply Rooted in Systemic Issues

Data reflects what's going on. It's like that Zen Proverb that says, "Don't look at my finger, look at where I'm pointing." If we frame data poverty as a data issue, we're looking at the finger and not where it's pointing. In this case, Mohsen says the finger is "pointing squarely towards longstanding, embedded systemic economic oppression and economic exploitation."

"Depending on how we focus," Mohsen said, "that's where our solution is going to come from." If we only focus on the data, we can't solve the real problem. 

McDaniel advocates for spreading awareness and education since many communities impacted by data poverty are unaware the issue exists. And just because someone has the data doesn't mean they'll understand it, either.

"To teach someone, we need to have cultural competence," McDaniel said. "It's as simple as understanding how people want to get in on this because you can't educate someone who's not open to the education."

To educate in a culturally competent way, the educator needs to meet people where they are and adapt the information to fit into the lifestyle and tools people already use. Understanding the full implications of data poverty depends on acknowledging what has happened in the past that has put us in this position today. But Soylu also points out that we also need to look to the future.

"There are consequences to owning data, as well as sharing data that are not necessarily clear to us today," Soylu said. For instance, health insurance premiums could increase. 

For more insights, click here to hear the full recording of the TechTalk. 

How Do We Incentive Data Participation?

The benefit of gathering more diverse data sets is to develop solutions that will benefit all people and not just some. But considering the distrust people have towards healthcare, how can researchers and entrepreneurs successfully incentivize participation?

The best answer is financial incentives since economic disparity is at the root of data poverty. There is also a fundamental difference in perspective toward health data. 

"When you talk to individuals about the data, if they think about it at all, they think about it in terms of privacy," Mohsen said. "I'm here to tell you that corporations are thinking about data in terms of money.

Let's look at it this way. A phase 1 clinical trial pays participants (people who need to take time off work or find childcare to go in) pays $3,000, on average.

Mohsen shared one instance where the company made a 73% profit margin, or $8.5 trillion, off the collected data. Worse still is the predatory behavior displayed towards developing nations. Dr. Williams shared a story of how an ophthalmologist paid people living beneath the poverty line $15,000 for an eyeball to research. While that is clearly exploitative, how do we define the balance between motivation and predatory behavior, especially in places desperate for economic relief?

The panelists found that the most appropriate solution is to apply the notion of cultural competence. Researchers, organizations, and entrepreneurs should learn about the country, its people, and what they truly value and need. McDaniel also suggested they pay for time and access to the body for research and a percentage of total profits.

A future solution could be to apply groundbreaking technologies like blockchain and make NFTs of our health data, everything from genomes to daily habits, that could pay us residuals throughout our lives.

Let's Not Forget About the Technology

Because we are talking about data, the technology context matters as well. Technology helps us uncover those fundamental economic and social issues we must address to improve physical health. For example, Mohsen shared his experience working in Uganda as a data scientist during the AIDS/HIV crisis. They were able to pinpoint a particular highway that had several community hotspots.

When they looked deeper, they found the virus in truck drivers and sex workers as young as ten years old. Technology shows us there is a bigger picture. But understanding how people use technology is paramount to making a positive, lasting impact. 

"There need to be more discussions around what technology would work in a given country and that they may not be up to date," Soylu said.

For example, when African countries started gaining independence, developing nations built modern, state-of-the-art hospitals that ended up turning into ghostlands because they didn't have the resources to maintain them.

Even if people are still using flip phones, Soylu said, "You can build very interactive systems on top of them that fit how people are interacting with technology." 

"Can you solve a problem with technology that technology created?" Dr. Williams asked, referring to how technology can cause problems we did not anticipate. 

To answer that question, consider something simple, like a hammer. Mohsen explained how if you bend the nail with the hammer, you can still use a hammer to fix it. But if you put a hole in the wall, you're going to need different tools to patch it.

"At the end of the day, is it the hammer's fault or the person swinging the hammer's fault?" Mohsen asked.

"Really, what's behind technology is people." McDaniel said.

Different people with different objectives can use the same technologies to solve problems. Until we fix ourselves, our tools will reflect who we are.

If You Can Do Something, Do It 

Data poverty is an incredibly complex and far-reaching issue. It's unlikely that the systems in place will do anything about it, but it's also not realistic to think anyone can solve it alone. Instead, it will require a share of effort on many different fronts.

At Kepler Team, we offer various software engineering and development services for healthcare companies in the US. Many of our clients turn to us when seeking a reliable team that can help them transform their solution into a versatile, universally compatible innovation that can easily fit into different clinical workflows.

Learn more about our services here or get in touch for a free consultation and quote.