The effects of systemic racism on access to medical care have repeatedly played out around the country – including the maternal mortality crisis, the elevated chronic disease rates among communities of color and the disproportionate impact of COVID-19 on Black, Latinx and Native people, to name just a few examples.
Too often, health IT professionals see these disparities as a challenge that can be solved via technology alone.
But former FCC Commissioner Mignon Clyburn says tools aimed at addressing inequity must also address the foundational issues in the health industry.
“We really have to ask ourselves right now – in the development stage, in the design stage, in the marketing stage, in the beta stage – we have to ask ourselves, have we really done all that we should and could to ensure that this [technology] is a game-changer to provide and change outcomes?” Clyburn said.
“Or is it hardwiring the negative outcomes we’ve experienced?”
Clyburn, who also served on President Joe Biden’s transition team and is now principal at MLC Strategies, noted the legacy of a healthcare system that has not allowed people of color – especially African American women – equal opportunities for wellness.
“We were patched up in order to execute certain functions, but our wellness, our mental health, our ability to benefit from treatment – that was not the primary function or interaction of the healthcare system,” she said.
“We haven’t come to terms and addressed the problems, the inefficiencies, the downright non-equitable and uncompassionate problems of the past,” she said. “So what are we building?”
Getting anywhere toward solving the long-term consequences of that system with digital health, Clyburn said, requires a candid and honest conversation.
“Who is building these tools? Who is designing these apps? Who is getting the funding? We know the answer. The answer is primarily … persons who have no connection to the most vulnerable communities,” she said.
Clyburn pointed out the ways in which tools, such as those powered by artificial intelligence, have been known to reproduce bias. A recent New England Journal of Medicine report found, for example, that pulse oximeters – frequently used in remote patient monitoring, especially for people with COVID-19 – may be less accurate for Black patients.
She also cited studies showing that many white medical students believe that Black people feel less pain than white people, which leads to racial bias in the accuracy of pain treatment recommendations.
“In health IT … who is giving the advice, and who is diagnosing?” she asked. “If you have the same horrible inputs when it comes to medical interaction and intervention, if you have the same prejudices – that’s still real.
“Some of your [AI] verifications don’t see my face as an African American woman, but it’s supposed to provide an on-ramp?” Clyburn added. “I think not.”
One major issue, Clyburn said, is access to broadband. Federal agencies, including the FCC, have largely focused on rural connectivity when it comes to allocating resources. But people in urban centers are also unable to connect.
“I’m not saying do not spend the money” on rural areas, she said. “I’m saying you’re not addressing the problem for millions of Americans.
“In the cities, there is digital redlining. There are pockets where there aren’t stable broadband-enabled solutions. There are incredibly expensive products out there that are out of reach for those who are working but are making minimum wage,” Clyburn said.
“The latest and greatest app that will make you a billionaire will do nothing for the grandmother who is raising a child on Social Security. What is their digital future? How have you improved their digital connection to better healthcare? What have you done?”
During a 2018 TEDx talk, Clyburn stressed the need for a digital civil rights bill that would work to combat this inequity.
Such policy, she said, would address these issues by declaring affordable broadband to be non-negotiable, similar to other utilities.
“It is a must because it is the infrastructure of now and the future,” she said.
According to Clyburn, people are sometimes disinclined to accept the fact that a new device will not necessarily lead to new outcomes.
“If I have been historically disadvantaged, [access to the latest technology] does not automatically put me on a level playing field,” she said.
“Part of the curing has to come from within,” she continued. “If we have inclusivity when it comes to those who are developing these digital solutions, then maybe we have a chance of moving the needle.”