Data Equity & Inclusion

How Effective Data Collection and Privacy Can Promote Health Equity

Talking about data can seem complicated or wonky, but inclusion and equity in demographic data is vital to our everyday lives. This is particularly true when it comes to health care for LGBTQ people, people of color, people with disabilities, and anyone from marginalized communities. It is also critical that data privacy is central to discussions about how data can improve health equity.

MAP is proud to be a part of a new collaborative series entitled “Risks and Rewards of Demographic Data Collection: How Effective Data Privacy Can Promote Health Equity” led by the National Health Law Program in partnership with MAP, Disability Rights Education & Defense Fund, Justice in Aging, and Race Forward.

MAP’s brief is the first in the series and focuses on how administrative data that are inclusive of LGBTQ people, race, disability, and others can advance autonomy and drive healthcare equity.

Getting Wonky About Data to Promote Health Equity

Administrative data — including electronic medical records and other data frequently collected in the day-to-day interactions with systems — tell a story, often over multiple points of time, that is quite different from survey data, and can have incredible promise when they are inclusive of demographic information like race and ethnicity, sexual orientation, gender identity, preferred language, and disability status.

The MAP brief in this series highlights some of the important opportunities for administrative data in the health care context for individuals, for health care systems, and for broader society, while also demonstrating that it is critical that administrative data collection systems are examined to ensure they are as inclusive as possible.

We know all too well that health disparities for various communities, including people of color, people with disabilities, gender and sexual minorities, and low-income people. Importantly, people do not live singular lives, and many people live at the intersections of marginalized identities. For example, a Deaf Black lesbian will experience unique experiences of discrimination and resiliency along the various dimensions of her identity.

Administrative data sets provide richer data, collected over time with relative consistency to better inform the healthcare needs of people from marginalized communities.

Data Drives Policy Decisions that Impact All of Us

We know that data drives policy decisions. To make informed and responsible policy decisions, we need consistent and inclusive data that accurately represent the experiences of people from various marginalized communities. For example, there remains a lack of consistent, coordinated collection of data about sexual orientation and gender identity across state and federal agencies.

When LGBTQ people and other people with marginalized identities are not seen and counted, the challenges we experience are too often rendered invisible and policy decisions don’t reflect our needs.

Better data collection helps ensure compassionate and appropriate health care for individuals. It can also shape institutional programs and services. Finally, more inclusive administrative data can improve the understanding of disparities and address those with policy improvements.

Accurate and comprehensive data can help policymakers and public agencies better serve our communities.

1. Ensuring Compassionate and Appropriate Health Care

Inclusive administrative data is beneficial in three key ways. First, it helps ensure compassionate and appropriate health care. This can help health providers identify the best procedures or identify specific risk factors, as well as allow patients to find inclusive healthcare providers and avoid those who have been found to discriminate. When patients know that they can safely disclose demographic information, they are more likely to feel comfortable discussing health and risk behaviors, all of which can drive better health care.

Assurances of data privacy are a critical piece of the puzzle; research finds that when patients know there are privacy considerations in place and that the information is being utilized to advance care, LGBTQ people want to share relevant information.

2. Shaping Institutional Programs and Services

Second, administrative data that is inclusive shapes institutional programs and services. When institutions have inclusive data fields, they can utilize this information to identify population differences, such as differences in safety, quality, or outcomes in a particular hospital or healthcare system.

For example, if transgender patients are less likely to return for a second annual exam, a hospital may want to explore whether transgender patients overall are having a negative experience with a particular clinician or facility.

3. Better Understanding and Addressing Disparities

Third, inclusive administrative data can improve the understanding of disparities and address those with policy improvements. For example, administrative data can be aggregated across geographies and systems to understand population-level experiences. This can help identify gaps in treatments for diagnoses by demographic characteristics, or otherwise examine the relationship between diagnosis, treatment, and outcomes based on demographic information.

Particularly when it comes to questions about sexual orientation and gender identity, race and ethnicity, and disability status, people often have real and present fears of discrimination, harassment, and even violence related to these core parts of their identities. As such, it is vital that responses to demographic questions be voluntary. Research shows that it is possible to ease these and other concerns and increase voluntary reporting by implementing recommended practices.

Agency is Critical for Frequently Marginalized Communities

When patients are given information about why they are being asked demographic questions, how the information will be used, and what protections are in place for their data, patients want to answer these questions and will do so. This way, they can determine that their personal information is appropriately used and contributes to broader goals around equity.

For example, in a survey of transgender patients, having information shared with them about the medical relevance of the information they were being asked to share, along with the patients feeling that the provider or health center was LGBTQ-friendly, boosted willingness to disclose.

▸▸ About the Four-Part Series

This brief is the first in a four-part report series — “Risks and Rewards of Demographic Data Collection: How Effective Data Privacy Can Promote Health Equity,” a joint project of the National Health Law Program, Disability Rights Education & Defense Fund, Justice in Aging, Movement Advancement Project, and Race Forward. This work aims to:

• Dispel myths about individuals’ willingness to share demographic information with health programs, plans, and providers.
• Highlight transparency and confidentiality protections that enable appropriate data-sharing.
• Recommend policies that secure personal identifying information and prevent misuse while promoting the effective use of demographic data.

The forthcoming three reports will cover the following topics: data utility and privacy concerns for demographic health data; big data, privacy, and its impact on people with disabilities; and information sharing, privacy, and managed care. Throughout each report, this series aims to address how healthcare entities can mitigate legitimate concerns while employing demographic data in its highest and best use to advance health care quality across all populations.