Grace Whiting, President and CEO
National Alliance for Caregiving
1730 Rhode Island Ave., Suite 812
Washington, D.C., 20036

June 29, 2020

No More “One Size Fits All” Research:

We Need Multicultural Data for Meaningful Patient- and Family-Engagement in America’s Health and Social Care Systems

Dear Friends:

This Juneteenth, I attended a national workshop on patient engagement and research agendas. Toward the end of the discussion, advocates raised an issue that’s been top of mind: racial equity. Why hasn’t there been more progress in capturing the perspectives and needs of Black patients and caregivers?

Feathers began to ruffle

Well-meaning scientists and policy experts were put on the defensive. Inevitably, the 1932 Tuskegee Experiments came up as a way to acknowledge the historical fears in minority communities that contribute to gaps in representation. The Tuskegee Experiments were that shocking and horrifying “study” where Black men with syphilis were not treated for the disease so that scientists could track the course of the untreated disease. Where Black men and their families were not told that the patients would not receive any treatment. The experiment was supposed to last six months; it lasted for 40 years.

It’s easy to point to Tuskegee as a historical byproduct of days gone by—but the reality is that racial injustice in healthcare did not stop with Tuskegee. It continues today in a quieter, more passive way: assuming a one-size-fits-all solution that ignores the lived experiences of diverse populations.

Nearly a hundred years since the Tuskegee Experiments began, nearly forty years since the disability rights movement took off, researchers and policymakers still need to hear, “Nothing about us, without us.”

Look no further than the COVID-19 pandemic to see how racial injustice opens the door for health disparities. Despite public health advisories that Black and Latino families face heightened risk for the coronavirus, Johns Hopkins has indicated that only four states have released breakdowns of COVID-19 data by race (Nevada, Kansas, Illinois, and Delaware). The CDC is clear that “current data suggest a disproportionate burden of illness and death among racial and ethnic minority groups.” Yet, the policy community lacks data to track what is happening to these families.

The CDC notes that health differences in COVID-19 between White families and families of color are “often due to economic and social conditions” such as:

  • Years of residential housing segregation resulting in more densely populated areas, increasing the risk of contagion.
  • Food deserts, which make it harder for families to get access to nutritious meals, and in turn increases the risk of chronic disease (another risk factor for COVID-19).
  • Overrepresentation of minorities in jails, prisons, and detention centers which increases threats to their lives because of a higher risk of catching COVID-19 in these settings.

These health risks are in addition to the fact that the pandemic’s economic fallout – which threatens food, housing, and income security for so many families – is being shouldered by Black businesses, as nearly 440,000 firms have folded (41% of all small business closures).

While the health policy community debates the cost or inconvenience of integrating diverse populations into research design, caregivers are making it work in real-time despite a system designed without them in mind and in the midst of a global pandemic. The need to make meals for someone doesn’t stop because the grocery store has limited hours. The spouse or partner still has to pay medical bills even if the pandemic has created new economic pressures. Parents of kids with special needs still have to navigate individualized education plans and insurance paperwork even if schools are closed.

Caregivers keep on, despite the roadblocks continually put in their way.

For our part, we at the National Alliance for Caregiving are committing to equity and justice. We have joined the Diverse Elders Coalition and the John A. Hartford Foundation as they work to address the needs of caregivers in Black, Latino, Asian American, Native American, and the LGBTQ+ community. We’re working with innovative companies like Amgen and seeking insight from nonprofit leaders such the National Minority Quality Forum to analyze the needs of multicultural care communities for a national report on caregivers of color. We will join the newly-launched Rare Disease Diversity Coalition, led by the Black Women’s Health Imperative, to address the challenges facing diverse populations in rare disease.

And, our data set from Caregiving in the U.S. 2020, a partnership with AARP going back to 1997, is one of the few caregiving data sets with nationally representative data of minority populations in the U.S. It reveals that four out of ten caregivers (39%) in the United States are non-white (14% Black, 17% Latino, 5% Asian American, and 3% other including multiracial). It also shows that Black caregivers are more likely to say that they are in worse health and more likely to want health care professionals to ask them what they need to help care for themselves—indicating a persistent lack of support for their well-being.

On a closer look, the data challenge preconceived notions about minority populations. Latino and Black families are more likely to say caregiving gives them a “sense of purpose” and meaning in life than their White and Asian counterparts. Despite giving more hours of care on average and being placed in higher-intensity care situations, these families report less emotional stress. Perhaps these communities understand something about resilience that the rest of us have yet to master?

It’s past time we moved forward to be more inclusive and transparent in order to reduce patient risk and assign value to patients’ health and well-being. Let’s take a lesson from those who care in understanding what they need, rather than telling people and caregivers that we know best based on unrepresentative data and outdated cultural understandings of need. If caregivers can stand strong, day after day, despite a global pandemic, despite inequities, despite political unrest, we too can get up every day, with hope in our hearts, with resilience in our spirit, ready to build a more caring world.

Frankly, we owe them that.

Grace Whiting
President and CEO
National Alliance for Caregiving