There is a problem with health data for people of Asian and Pacific Islander heritage

Scaling up the fight against racial discrimination: Data-driven health care for a community of blacks, blacks and whites

Researchers are working to remove racial bias that has been built into diagnostics, and by doing so they’re changing not just tools and algorithms but lives. Some patients who have the same lab results as white patients can move up the wait list for a new organ if they’re deemed unqualified to do so in the past, but others may be able to file for disability after being deemed unqualified. Epidemiologists are discovering that prior assumptions about race lumped together disparate groups with different needs and health risks in certain Asian American communities. By teasing apart the data they can better diagnose, treat and prevent disease. Health writer Jyoti Madhusoodanan reveals how this data-driven approach is already saving lives.

Our global health infrastructure needs to be rethinking in order to improve health equity. Each solution begins to build a path for justice.

The social stressors Kauh’s parents experienced were financial and cultural, both of which can affect a person’s health. Whether a person migrates to pursue a graduate degree or is forced to flee from conflict in his country of birth, language barriers, racism, and changes in diet can all add up. A person’s health is determined by many factors but none of them are related to the biological basis of disease.

Discrimination can be justified when diseases are more prevalent in a group that is already marginalized. The people most likely to get mpox are men who have had sex with men. According to global health expert Charles Ebikeme, researchers, clinicians and community members learned from past experiences and are now building new networks and clinics that cater specifically to this stigmatized population. Even health-care communication is improving, writer Rod McCullom shares in a feature, as the movement toward culturally sensitive care helps clinicians better understand and empathize with their patients.

Bringing Hope to the Children of the 21st Century: How to Make Young People Evolve and Think Positively about Their Lives

Just fanning their energy, their passion, might well be the biggest source of hope for all of humankind. But we need to go beyond that because although their diagnosis is perfect, their ability to act is limited. They are not in control; they don’t vote often. The adults are making the big decisions and the kids are usually given two minutes to speak at the front end. So how do we potentiate them to go beyond just sound bites or nice photo ops to action and give them empowered ways of doing things?

I feel like their moral clarity is the clearest because, unlike older people who already bought into something or were worried about their next paycheck or position or winning awards, young people are devastatingly clear in terms of what’s wrong. Their problem statements are accurate and give me a lot of hope. That’s partly why I still teach global health to young people.

My biggest source of hope is young people. It is the young people who are shining a light on what has been obvious for a long time and why the leaders are not acting. It’s the youngest people who are doing great work in the U.S. on gun control, even as they’re getting slaughtered in schools. It’s the young people who are alarmed about the rollback of reproductive rights in the U.S., in Afghanistan, you name it.

“Any level of justice work has to be rooted in a context of hope, right?” says Aletha Maybank, chief health equity officer at the American Medical Association. “A hope and faith that we will all be able to have an experience of optimal health.”

One of the things that gives me hope is the work that I’m doing, along with many other incredibly brilliant scholars across the country, around measuring racism. We must be able to make invisible visible in my work and research center. When it isn’t an explicit interaction with someone, Racist is very hard to identify, and it is passed off as a problem that exists in the system.

We must change the narrative of what people can do and what they are able to do and start asking, Who gets to be trained? Who is responsible for having the knowledge? Who gets to make the decisions? Who makes what and where it goes? The decisions are done at a level of leadership. If you diversify that leadership, you will have a better, more balanced opinion about how things should be done. That’s how you start moving toward equity.

Four African American students did almost all the bench work that was needed to get the Moderna COVID vaccine into that first phase 1 trial in March 2020. They are very proud of getting the vaccine program launched.

Hopefulness comes from a faith and belief that things have a way of evolving toward the good. The moral arc of the universe bends toward the good. It may take a long time. Helping to create more opportunities and knowledge for students is one way to help to diversity the public health workforce.

More than 20 years ago I remember going to a clinic very far away from the capital city in one of the provinces in South Africa. There was no opportunity for people to be tested for HIV or to be treated, and this nurse opened a notebook that she had in a drawer at her desk, and said, “I have a list of people who need treatment.” She pulled out another sheet of paper and said, look at this. I received a certificate. I have been trained. I’m ready. I would love to save my people. I remember thinking, “This gives me hope.” There are people who care about their communities. They are ready, they are willing. And I’ll never forget that, and I’ll never forget the look on her face of “I can’t wait anymore.”

I see Black scholars interested in figuring out how we can measure structural racism and then use that to inform policy change in a lot of my work. There is a need to understand that social policy and health policy go hand in hand. We can’t, for example, talk about historical redlining and racial covenants and birth outcomes in those communities without having the data, without understanding the history as well as what’s happening currently. And then using that to inform housing policy just as much as we might use that evidence to inform health policy.

If a person wanted to do a study in Nigeria, they would rely on some of the infrastructure there but ignore any knowledge of what the locals know. Then they go home and write this paper and publish it in the BMJ or in the Lancet. I see more and more that the pushback on that is what has changed for me. That’s just the tip of the iceberg. But that physically measurable, countable phenomenon of partnership research sits on a whole bed of assumptions and normalized practices that we took from the colonial experience.

I am hopeful that a growing confidence and restless feeling from global health professionals and academics from and in the Global South is indicative of how the field itself needs to change. Historically the field was premised on this idea that the West—or the Global North, as we refer to it today—has a right and a duty to impose itself on the rest of the world.

These efforts are improving AANHPI health outcomes, says epidemiologist Stella Yi of New York University Langone Health. The disaggregating of AANHPI data has helped health-care professionals improve the rates of hepatitis B vaccine, reduce the number of fires in Hawaiian communities and identify better diet strategies for South Asian communities who are at higher risk of heart disease. Yi says it has been exciting to watch.

Meeting community needs can make a range of infectious diseases more manageable. In the early 2000s only children received routine hepatitis B vaccine in New York City. Among adults the virus was typically seen as a sexually transmitted infection (STI), and testing and treatment were offered primarily at HIV clinics.

But the infection was common among Asian American immigrants because of high endemic rates in their countries of origin. In families the virus passed between married partners, from person to person through household contact such as the sharing of utensils, and from mother to child during childbirth. These adults were unlikely to seek care at an STI clinic. The researchers reported that the rates of hepatitis B in Asian Americans were about 50 times higher than the average for non-Hispanic white people. In 2003 researchers at New York University teamed up with community organizers, politicians and clinicians in the city to help address the disparity.

Tailoring care after the Maui wildfires: Identifying needs of communities in terms of COVID data that help clinicians understand their own health

The team was able to Tailor care after the Maui wildfires by recognizing specific needs such as shelter and medicine. Its methods have since been highlighted by the World Health Organization as an effective way to reduce health disparities.

The researchers worked with each community to identify specific requirements. Some needed a safe place to keep healthy family members distanced from those with COVID, others wanted more resources allocated to food or medical care, and still others sought a way to maintain social connections or attend religious gatherings virtually while observing COVID precautions.

To gather those data, Quint teamed up with Matagi and Kaholokula, the University of Hawai̒i physician, to form a COVID investigation team. The group found no way to figure out which communities needed resources, or what those resources were. The data at hand were simply too sparse to base any estimates on. So the team began recording COVID deaths with more specific demographic details. When counts were low enough that they risked making individuals identifiable, the team noted these details in a separate section of the database to ensure that information from smaller communities was not lost in an aggregate, Matagi says.

In Hawaii, a strategy of getting community data was a lifesaver during the worst of the Pandemic. The state health department’s infectious disease team was heavily focused on controlling the spread of the virus at the start in 2020. But the scientists were “thinking of it in terms of a purely biological system versus understanding what puts people at risk,” says Joshua Quint, an epidemiologist at the Hawaii State Department of Health. “Accurate measurement of social factors is so important.”

Data such as these can help clinicians advise patients more effectively by offering dietary solutions that may be easier for them to follow rather than forcing a more Western lifestyle on them, Kanaya explains.

Researchers can start designing tailored solutions when they understand the link between social factors and people’s health. Food is one clear example. In the U.S., South Asian communities have disproportionately high rates of heart disease—an observation often explained by diet, says Alka Kanaya, a clinician who studies diabetes at the University of California, San Francisco. The standard questions used to gather information about food habits are based on the Western diet. The Western diet has been used to help advise about what constitutes a healthy food. “You have to be specific to what people may be eating and how they may be cooking it. Kanaya says that nonaccurate ways of measurement give you useless data.

The parents of Kauh owned a convenience store. Even as a teen, Kauh could tell that their grueling schedules, language issues and social isolation took a physical and mental toll. Their lives were hardly those of a model minority. “I could see the challenges they experienced on a daily basis, but no one ever really talked about that except to frame it as ‘look how hardworking they are,’” she says.

Kauh was first introduced to that cycle in college during a class on how culture and ethnicity affect someone’s behavior. She tried to dig deeper into the experiences of Asian Americans but could not find the data. Kauh persisted, revisiting the topic in graduate school but says she found it “basically impossible” to get funders interested. Since then, she says, “it’s been this mission of mine to try to push for collecting data about Asian Americans.”

Source: How to Fix Health Data for People with Asian and Pacific Islander Heritage

A longitudinal study of social stress in Asians and Filipinos: a first step towards data equity, better health outcomes, and a physician’s perspective

When data are pooled, these nuances vanish. The University of Hawai’i at M’noa has a physician who says that estimates are no longer valid. It is nonsense. It’s not good science, yet people have been doing this for decades.”

Now efforts led by advocates, researchers and community organizers—most of them from AANHPI communities—are paving the way to data equity and better health.

There is a study that shows that people of different ethnicities have different stressors. People who experienced more social stress had poorer sleep, struggled to exercise, and used more nicotine, which is associated with higher rates of heart disease. There were differences between groups. In Chinese Americans, stress was linked to an increased risk of diabetes, while Filipino adults had high blood pressure. Asian Indians were most likely to experience poor sleep and physical inactivity when bearing the brunt of social stress. “There are significant differences in how social determinants of health impact the different Asian subgroups,” Yang says. Recognizing this variation is a first step toward helping physicians tailor interventions more appropriately.

Many of the patients who come to the clinic come from other parts of Southeast Asia such as China, Korea, and India. His clinic is in Seattle, a hub for the tech industry and home to thousands of immigrant workers. People from each of the groups were at risk of cardiovascular disease, and their lifestyles differed.