The role of high-quality data on race and ethnicity is a key tool for reducing health disparities, but problems with data availability can limit this potential. These are the findings of the report “Collection of Race and Ethnicity Data for Use by Health Plans to Advance Health Equity“.
This new study by the Urban Institute, the American Benefits Council, and Deloitte’s Health Equity Institute highlights that inconsistent and incomplete data on the race and ethnicity of health plan enrollees makes it difficult to monitor and evaluate efforts to reduce health disparities.
The Elevance Health-funded research raises the question that it is known that improving the collection of data on race and ethnicity for use by health insurers, and others can help identify and reduce health inequalities, but how to collect it?
To achieve this, the views of various stakeholders in the health sector, including commercial health plans, health care providers, employers, community organisations, foundations and research bodies, suggest several possible actions to improve the availability of high-quality data on race and ethnicity.
These actions include:
- Developing a collective understanding of the value of improving the quality and availability of data on race and ethnicity.
- Including community engagement and trusted community partners in efforts to improve data collection.
- Ensure transparency of the reasons for data collection and the creation and sharing of safeguards to ensure data security and patient confidentiality while avoiding harm to historically marginalised individuals and communities.
- Address concerns about the legality and permissibility of data collection and sharing by employers and others by clarifying federal government language.
- Contribute to and strengthen current efforts by federal leaders to develop more inclusive standards for voluntary, self-reported identification of race and ethnicity.
- Invest in updated data collection standards, interoperable data systems, and robust data collection training for frontline health care workers.
Industry cannot improve what it does not measure. Jay Bhatt, Executive Director of the Deloitte Center for Health Solutions and the Deloitte Health Equity Institute, said, “It’s important to continue to analyse care delivery and look at patient outcomes by demographics, including race and ethnicity.
“But also sexual orientation, gender identities and language are essential to administering more equitable and inclusive care, and building trust with communities across America.”
Shantanu Agrawal, M.D director of health at Elevance Health, continued: “The insights and recommendations in this report underscore the importance of transparency and partnership as we work to improve our collection and use of race and ethnicity data to advance health equity.”
James A. Klein, president of the American Benefits Council, agreed: “The recommendations in this report present a roadmap for addressing barriers to health equity.”
This is especially true after two years of the pandemic, which exacerbated health inequities in communities of colour and increased the urgency for both more comprehensive self-reported data on race and ethnicity and better data collection processes.
Jennifer Haley, senior research associate at the Urban Institute, said: ‘More comprehensive data increases the likelihood that people in these communities will receive care tailored to their needs, leading to more positive health outcomes. At the same time, safeguards are needed to protect the privacy and safety of patients and to ensure that marginalised groups of people are not discriminated against or harmed by the health system.”
Meanwhile, a related survey, conducted separately by Deloitte’s Health Equity Institute and titled “Trust, inclusiveness may be key to richer race/ethnicity data“, found that most people are comfortable sharing their race/ethnicity data with their insurance company. But almost 60% of respondents are concerned that this data will be sold or shared with third parties without their consent.