Tackle systemic racism to diversify health care and clinical research
Solving structural-racism problems in health will require everyone, from community members to heads of university departments, to be engaged.
Science is steeped in injustice and exploitation. Scientific insights from marginalized people have been erased, natural-history specimens have been taken without consent and genetics data have been manipulated to back eugenics movements. Without acknowledgement and redress of this legacy, many people from minority ethnic groups have little trust in science and certainly don’t feel welcome in academia — an ongoing barrier to the levels of diversity that many universities claim to pursue.
In the next of a short series of articles about decolonizing the biosciences, Tung Nguyen, who was appointed associate vice-chancellor for research inclusion, diversity, equity and anti-racism at University of California, San Francisco (UCSF) in September, offers advice for reforms in health research. Nguyen, a health-equity researcher who is also the director of the UCSF Asian American Research Center on Health, says anti-racism efforts start with engaging underserved communities and nurturing diverse trainees in health research and health care.
I studied medicine because I didn’t see health care and health research addressing the needs of the Asian community in the San Francisco Bay area — the part of California where I moved, as an 11-year-old non-English speaker, when my family emigrated from Vietnam. For the past 20 years, I’ve been doing health-equity research, focusing on cancer interventions.
In this country, the health-research world has many aspects that are anti-Asian. A lack of data on one racial identity is always a sign of racism because it essentially means that a portion of the population is invisible. For example, we know that about one-third to one-half of Asian Americans don’t speak English well enough to take a medical survey conducted in English. The ‘Asian’ responses to such a survey will include only English speakers; in addition, all of the ‘Asian’ respondents will be lumped together, despite the diversity of Asian cultures.
Lack of urgency
Although some institutions are trying to hire diverse candidates, there is a fundamental lack of urgency when it comes to addressing systemic racism. The issues I’ve mentioned are all structural problems. I think that there can be no systematic change without engaging everyone involved — from medical-department heads to members of the communities that institutions purportedly serve.
In 2020, my colleagues and I created an anti-racism task force at the University of California, San Francisco. Using a community-engagement approach, we convened a committee of 25 members, including institutional and community leaders, staff, faculty members and trainees. Over the course of a year, we solicited information throughout the university and produced a report with 160 recommendations — ranging from funding for research that investigates the structures that sustain racism, to conducting more community engagement in scholarship.
Most institutions are too top-down. I’ve learnt that the academic hierarchy is a basic challenge to doing equity work on campuses. White men tend to be over-represented among faculty members, whereas non-faculty staff members tend to include more women and under-represented minority groups. We make sure the staff and faculty members meet and are mindful of — and acknowledge — the power dynamics that exist. Otherwise, our efforts wouldn’t be inclusive.
To better diversify recruitment of study participants, in 2021, my colleagues and I created the Research Action Group for Equity, or RAGE — an acronym we deliberately chose because we are angry about the lack of minority-health data and participation, and we want to make things uncomfortable for the powers that be. RAGE works with the UCSF Clinical & Translational Science Institute to make sure that recruitment is an inclusive process. We engage community leaders who are bicultural or bilingual to provide translation support or address cultural concerns.
If my colleagues and I can diversify the health-care workforce at UCSF, we can definitely improve the economic status of diverse communities as well as the reach of biomedical research into those communities. We have a US National Institutes of Health BUILD award to address the lack of diversity among biomedical researchers. If you want minority students and trainees, you have got to go to where they are. In our case, we recruited trainees from San Francisco State University, a Hispanic-focused, minority-serving institution. We trained these junior research and health professionals to become, for example, clinical research coordinators to manage studies and conduct experiments.
This expands the job opportunities available to these trainees and diversifies participation in research. But when people talk about efforts to increase the numbers of early-career scholars from diverse backgrounds, I hate the term ‘pipeline programme’. ‘Pipeline’ implies that you have to fit into a pipeline to begin with and you come out the other end, where the system wants you to come out. Furthermore, if the pipeline is producing a steady stream of talented PhDs from under-represented communities but the system does not increase the number of senior roles these people hold, it’s not a pipeline problem. Instead, it’s a dam problem — pun intended; there are structural barriers to workplace diversity that need to be removed.
UCSF has its own continuing challenges in terms of anti-racism efforts, but the institution has been transparent. It has a dashboard that highlights racial, ethnic and gender diversity among faculty members, staff and trainees. The situation fluctuates, and the numbers have never been great for typically under-represented groups in medicine, such as Black and Hispanic people. But it’s important that the problem be visible so that we can actually improve.
It’s frustrating that successful diversity, equity and inclusivity programmes often don’t get sustained. Under-represented groups are used to people coming in with money and then leaving. I have helped to develop the AEIOU principles, which will be the foundation of my work as the newly appointed associate vice-chancellor for research inclusion, diversity, equity and anti-racism. A is for accountability and anti-racism, E is for engagement, I is for individual-centred institutional change, O is opportunity, and U is unity. These principles are key to making progress against racism. The system has to change for under-represented groups to be successful, and that requires an increase in opportunities. Oppressive structures maintain oppression by making people perceive a zero-sum game — if someone wins, someone else has to lose. To increase diversity, equity and justice, we need to quit pitting one group against another.