If there is a silver lining of COVID-19, it’s that it has required us to address monumental health care disparities, particularly racial and ethnic disparities. I’ve been working on health care disparities for more than two decades, yet I’ve never seen our health system move so fast. Across the US, those of us in health care have been scrambling to bridge gaps and better understand why COVID-19 disproportionally impacts communities of color and immigrants — and, indeed, anyone who struggles with social determinants of health like lack of housing, food insecurity, and access to a good education.
A key lesson: Lived experience should guide change
I came to this country as an undocumented immigrant when I was 13 years old. English was not my first language. My mother was a single, teen mother and I’ve only seen my father twice in my lifetime. My childhood was filled with all the trauma that we hear about from many of our patients: domestic violence, drug addiction, mental health issues, foster care, and more. You can imagine, then, that all of this feels immensely personal to me, and drives me in the work that I do as director of the Disparities Solutions Center at Massachusetts General Hospital.
One key lesson is that there is no substitute for lived experience. We need people with lived experience to help redesign our health care systems so that we can take care of all our patients, and to help reimagine emergency preparedness for future events like the COVID-19 pandemic. Our health care teams should routinely include people from communities that bear the brunt of health inequities. Currently, our health care system is designed by default for the English-speaking person who is health literate and digitally literate, and who has access to computers and/or smartphones — because that is who is designing our systems. As we work toward change based on lessons learned from the COVID-19 pandemic, and those we’ll continue to learn, we need to keep this in mind.
If you’re a member of the communities hit hardest by the pandemic, you can help by sharing your experiences — what worked, what didn’t — and advocating with health care institutions, community leaders, and through social media for approaches that address COVID-19 health care disparities. The ones I describe below are common themes from hospitals we’ve worked with, as well as what we have seen in our own healthcare system.
Take the steps required to build community trust
Trust is key to having messages about lessening the spread and impact of COVID-19 resonate with the community. But trust is often shaped by historical events. Health care organizations must look deeply at ways in which historical events have led to mistrust within the communities they serve. The messenger to each community needs to be a trusted community member, and outreach needs to happen in the community, not just at your health care facility.
Invest time in addressing language barriers
Integrating interpreters during a medical visit, whether in person or via a virtual platform, is not easy. And in fact, it’s not intuitive in most US health care systems. At MGH, we saw this with the intercom system used to safely communicate with our hospitalized COVID patients, and the virtual visit platform used for outpatient settings. Adding a third-party medical interpreter into these systems proved challenging. Input from an interpreter advisory council and bilingual staff members who took part in redesigning workflow, telehealth platforms, and electronic health records helped.
Making sure educational materials are available in multiple languages goes beyond translating them. We also need to get creative with health literacy-friendly modalities like videos, to help people understand important information. Ideally, our workforce would include bilingual health care providers and staff who could communicate with patients in their own language. Absent this, integrating interpreters into the workflow and telehealth platforms is key.
Understand that social determinants of health still impact 80% of COVID-19 health outcomes
COVID-19 disproportionally impacts people who are essential frontline workers and who can’t work from home, can’t quarantine through isolation, and depend on public transportation. So yes, social determinants of health still matter. If addressing social determinants seem overwhelming (for example, solving the shortage of affordable housing in Boston), then perhaps it is time for us to reframe the challenge. Rather than assuming the burden is on a health care system to solve the housing crisis, the question really needs to be: how will we provide care to patients who don’t have housing and live in a shelter, or are couch surfing with friends and families, or live in cheap hotels or motels?
Use racial, ethnic, and language data to focus mitigation efforts
Invest time in improving the quality of race, ethnicity, and language data in health care systems. Additionally, stratifying quality metrics by these demographics will help identify health disparities. At MGH, already having this foundation was key to quickly developing a COVID-19 dashboard that identified in real time the demographics of patients on the COVID-19 inpatient floors. At some point during our first surge, over 50% of our patients on the COVID units needed an interpreter, because the majority came from the heavily immigrant Boston-area communities of Chelsea, Lynn, and Revere. This information was crucial to our mitigation strategies, and would help inform any health care system.
Address privacy and immigration concerns
Overwhelmingly, our health center providers, interpreters, and immigration advocates tell us that immigrant patients are reluctant to participate in virtual visits, enroll in our patient portal, or come to our health care facility because they are afraid we will share their personal information with Immigration and Customs Enforcement (ICE). We worked with a multidisciplinary group and our legal counsel to develop a low-literacy script in multiple languages that describes to these patients how we keep their information secure, why we are legally required to keep it secure (HIPAA), and in what scenario we would share it this with law enforcement (if there is a valid warrant or court order).
Additional strategies include educating providers to avoid documenting a patient’s immigration status, and educating patients on their rights and protection under the US constitution. In short, this relates back to the first point of creating trust between the health care organization and the community it serves.
Equitable care is a journey, not a single goal. Only by taking crucial steps toward it can we hope to achieve it, course-correcting with new lessons learned from this pandemic as we go.