Developing coronavirus innovations requires diverse voices

As racial disparities surface in the coronavirus pandemic, tapping diverse perspectives to create digital health tools is key.
By Laura Lovett
04:11 pm
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It's no secret the novel coronavirus has particularly impacted communities of color as it sweeps across the United States. But as digital health tools emerge to respond, leaders in the African American medical community caution that those who are creating such tools need to involve diverse voices and work to understand the causes of the disparities if they are to be effective. 
 

Data about the coronavirus and race continues to trickle out of a variety of sources. However, the CDC does note that current data “suggests a disproportionate burden of illness and death among racial and ethnic minority groups.” The agency points to a CDC MMWR report of 580 patients, which suggests an overrepresentation of African Americans among hospitalized patients. 

“I think there is clearly something there. Part of the problem is we aren’t routinely collecting race, ethnicity, socioeconomic data on the people we test,” Dr. Christopher Gibbons, CEO of The Greystone Group and assistant professor of medicine at Johns Hopkins, told MobiHealthNews. “So there is a larger number of people who we’ve tested that we don’t know what demographic they come from. Then, quite frankly, because we don’t have enough testing, there is a larger number of people who we don’t know have it. … So the data that we do have is not the highest quality, but based on what we have there are some strong indicators that there is an issue here.”

The long history of inequities 

Today coronavirus is the focus, but inequities in the American healthcare system span centuries. 

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“One of the ways to look at this is this is part of a broader set of issues or problems that have been going on in our society and underserved populations for a long time,” Gibbons said. “They relate to everything from access to care and trust and mistrust of the healthcare system, to [mistrust in] government and society. In this new emerging digital age, it has to do with who has digital access and who doesn’t have digital access. All of these things come together in many fronts to enable and cause underserved populations to have poorer outcomes than they should have.”

When discussing health inequities, race shouldn’t be confused with poverty. He brought up the state of Maryland as an example. Prince George county, which has one of the highest densities of affluent African Americans in the country, has the highest rate of coronavirus cases in Maryland at 6,735 patients. The rates are also high in urban Baltimore. 

“Certainly poor populations have greater disparities, and the magnitude and size of the disparities are greater. And they have less of an ability to fix those,” Gibbons said. “But we actually find significant disparities in non-poor African American and other racial and ethnic minority groups. The true understanding of disparity is not based just on poverty – there is much more going on there."

However, individuals in poorer communities have unique obstacles. 

“Unfortunately, when we talk about inner city environments, they are structurally set up to exacerbate the transmission of COVID-19,” Damon House, program manager at Microsoft Enterprise Services, said during a HIMSS20 Digital panel. “When we look at affordable housing that does not have effective ventilation and air conditioning systems, that is a problem. When we look at public transportation, people in our underserved and urban communities are more likely to use public transport, and you cannot socially distance if you are sitting next to someone on a bus or subway. When you look at education through our municipal leaders, are they getting information out to and through different means where people in the urban communities are likely to hear it?”

Tapping the community for input 

Innovators have long pitched tech as a way to help provide cheaper care in more locations. However, when treating diverse populations tech can be a double-edged sword. 

“Digital is an amazing opportunity, but if we don’t get it right we will … enhance disparities and make them worse,” Gibbons said. “We will probably make them worse faster than before because data is moving so quickly. If some populations get them and some don’t then we are going to be expanding disparities that are already there. There’s just no other way to look at it; some populations will benefit while others don’t.”

With these concerns in mind, bringing the end user into the process of technology creation is key. 

“Most of the people who are building these tools and solutions simply don’t come from communities of color,” Gibbons said. “On top of that, their experience with people from these types of communities is very limited.”

Historically many underserved communities have a distrust of the medical establishment, Gibbons said. However, leaders in the community, such as pastors, can help foster this relationship. 

“There are leaders that the communities trust, and leaders that the communities are more likely to follow,” Dr. Shelley Cooper, CEO of Diversity Telehealth, said during a HIMSS20 Digital event last month. “I think in many cases our religious leaders or our political leaders, and sometimes even our de facto leaders, are people that would be the ones to gather the information and present it to the communities.”

Gibbons said that he is teaming up with a pastor in West Baltimore to bring more resources right into the community. 

“Testing sites and resources that are not being deployed in these communities or as one organization. A pastor in West Baltimore said, 'Come help us. Please help us, because we are the last people to get help of any kind. Our people aren’t going up there to get testing. Can you come help us?'” said Gibbons. “So we are working with them. We started a program there in these neighborhoods to address these issues.”

But it’s not just the leaders of the community that can be involved, it’s everyone. Innovators and medical providers must be able to address certain obstacles to include these voices. 

“One of the innovations I’ve seen in some organizations is to invite members of the community, particularly vulnerable populations, to the table to add to the discussion,” Duane Elliott Reynolds, founder and CEO of Just Health Collective, said. “Sometimes that means doing things like covering the cost of their hourly salary in order to have them be able to leave work, because a lot of these folks in vulnerable populations may have financial difficulties. But the critical aspect is to invite them to the table and allow them to provide their perspective, which allows you to build trust.”

While the public’s attention is focused specifically on the coronavirus for now, that doesn’t mean this can’t change the way innovation happens in the future. 

“We need diverse thought leaders, we need diverse policy makers, we need diverse care providers and we need people who are diverse building tools to address the needs of populations who are chronically underserved throughout history,” Kistein Monkhouse, founder and CEO of Patient Orator, told MobiHealthNews. “I think if we can start including all people in decision-making and discussions in building technology, I think we’ll see a huge change in terms of the trajectory of life expectancy and outcomes.”