Invisible populations: race and ethnicity data are needed for equitable cancer control
Understanding the impact of race and ethnicity on cancer outcomes is crucial, yet often overlooked. The absence of detailed data on these factors is not just a gap in information, but a form of discrimination that hinders the delivery of effective and equitable cancer care worldwide.
In this article, Associate Professor Mei Ling Yap, Head of the Cancer Program at The George Institute and Conjoint Associate Professor, UNSW Sydney; and Dr Vikneswary Batumalai, Senior Research Fellow in the Cancer Program at The George Institute and Adjunct Senior Lecturer at UNSW Sydney, reflect on the barriers and possible solutions as outlined in their recent paper in JCO Global Oncology.1
Why race and ethnicity matter in cancer control
Cancer affects different populations in unique ways. People from minoritised groups face barriers throughout the cancer care continuum, starting from screening and early diagnosis to treatment, survivorship, and palliative care. These barriers stem from systemic racism resulting in health systems that lack cultural congruence for diverse populations. This disparity leads to variations in survival rates, treatment toxicity, financial burdens, and the overall strain on caregivers.
Ignoring race and ethnicity in cancer control policies not only perpetuates existing disparities but also misses opportunities to tailor interventions specifically designed to meet the needs of these groups. For example, clinical trials often reflect a bias towards white participants, leaving out minoritised racial and ethnic populations, which leads to recommendations that are not universally applicable.
Challenges in collecting data
Collecting race and ethnicity data is fraught with challenges. Legal frameworks in some countries, aimed at preventing discrimination, ironically limit the ability to gather such data. Technical issues, such as how to accurately classify race and ethnicity, also pose significant hurdles, particularly for individuals who identify with multiple ethnicities.
The issue is even more pressing in low- and middle-income countries where the scarcity of electronic health records and cancer registries makes it difficult to gather accurate cancer data stratified by race and ethnicity. These challenges are compounded by socioeconomic and structural inequities that impact cancer outcomes.
The invisible populations
Without proper data, certain populations remain invisible within the cancer control landscape. For instance, refugees and recent migrants, who often face unique challenges, are typically underrepresented in most global datasets. Current methods of data collection tend to rely on overly broad categories that fail to capture the nuanced differences within and between groups, thus masking crucial disparities.
Some examples of these are provided in this table:
| Stage of cancer continuum | Jurisdiction | Findings |
|---|---|---|
| Cancer screening | Scotland | Less uptake in breast cancer screening in Pakistani, African Indian, and Other South Asian populations |
| Stage at presentation | United Kingdom | Caribbean, Asian, and African patients more often diagnosed with late-stage cancer |
| Distribution of cancer type | China | The most common cancer in the Uygur population in the Hotan District is cervical cancer, which differs from data from the Han population in wider China, where lung cancer is the most common diagnosis |
| Access to treatment | United States | Lower uptake of adjuvant radiation therapy for early-stage endometrial cancer in Black, Asian, Hispanic, and other race, compared with White |
| Treatment toxicities | United States | Higher rate of cardiotoxicity after trastuzumab for HER2 +ve breast cancer in Black patients |
| Survival | Zimbabwe | Survival higher for White individuals with breast or colorectal cancer, than Black individuals |
| Survivorship | United States | Patients who experienced racial/ethnic discrimination had poorer quality of life |
| Palliative care | United States | Hispanic patients with hepatocellular cancer are less likely to receive palliative care than White patients |
| Financial toxicity | United States | Black patients are 5 times more likely to be denied insurance and twice as likely to be hurt financially because of cancer, compared with White patients |
Proposed solutions
In our paper, we propose possible solutions to address some of the main problems:
Standards and guidelines
Establishing and adhering to international standards for collecting and reporting race and ethnicity data would help overcome current limitations.
Incorporating data into policy
Making the recording of ethnicity data routine in healthcare settings would provide a clearer picture of inequalities, which could then be addressed more effectively.
Engaging funders and publishers
Encouraging research funders and publishers to require race and ethnicity reporting would ensure that studies reflect the diversity of populations affected by cancer.
Technological advancements
Leveraging technology, such as electronic health records and artificial intelligence, could revolutionise how race and ethnicity data are collected and analysed.
Collaborative strategies
It is essential to engage consumer communities in the development of culturally relevant data collection methods. Empowering those with lived experience to lead and co-design these processes is vital.
The need to prioritise the collection of race and ethnicity data in cancer control is urgent. By confronting this uncomfortable reality and investing in comprehensive data collection, we can begin to dismantle the disparities in our health systems. This effort will ensure that cancer control strategies are effective and equitable across all groups.
Reference:
1. Mei Ling Yap et al. Invisible Populations: The Need for Race and Ethnicity Data in Cancer Control. JCO Glob Oncol 11, e2500049(2025). DOI:10.1200/GO-25-00049
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