PopCtr Mtg: LGBT Data Inclusion on the Health Center Level

By Emilia Dunham

Program Associate, Reporting on the Center for Population Research in LGBT Health at The Fenway Institute on Panel presentation on possibilities and challenges working with patient data with Judy Bradford, Chris Grasso, Ken Mayer, Valerie Fein-Zachary


Data, data and more data. Perhaps to some it seems like we talk about data like it’s going out of style. It may seem obscure, distant and ironically abstract, something reserved for academics, researchers and federal government officials; it may seem that data comes mostly from large research studies at large institution networks or within national surveys. However, data can be collected at community health centers with meaningful impact.

Chances are your local health center collects data already through intake and

Dr. Judy Bradford

visits, and if electronic as it’s easy to collect. Chris and Judy discussed what Fenway is doing and how they are including more LGBT questions. Data from that will be available after publications, however it’s a great way to learn about the population, extract patient information and contribute to public health knowledge.

If you’re a patient, you may wonder is your personal information safe? The answer is Yes!  Fenway and other health centers adhere to strict federal regulations, provide all patients with privacy and Health Insurance Portability and Accountability Act (HIPAA) notices, and that any research is de-identified and goes through an Institutional Review Board. As someone who worked for this board for a year, I would know it’s very safe! To be able to understand the populations you serve, their health risks and potentially influence others to do the same, simple data collection can turn into a huge community gain. And you always have a right to ask how your information is being used even though there is little harm but potential broad benefit.

For instance in past studies, it was found that 48% of HIV+ clients at several facilities serving many people living with AIDS were smokers (Crane 2011 [full citation needed]). Just imagine the implications of these types of data!

So what can you do?

Challenge yourselves and others to work with local advocates in health centers in order to collect data on LGBT patients by asking questions of sexual orientation and gender identity on demographic forms. For instance, at your health center, you could advocate for your center to participate in the Healthcare Equality Index of the Human Rights Campaign to identify ways in which health centers can be more inclusive and eventually add LGBT questions. This index also includes LGBT non-discrimination measures and sensitivity, so asking for their participation in the HEI could add to your healthcare facility’s LGBT cultural competency and positive impact for the communities.

Published by Emilia Dunham, MPP, MBA

Emilia Dunham is currently a Project Manager at MassHealth/Department of Public Health, and formerly the Project Manager of the Life Skills project at The Fenway Institute, an HIV intervention study for young transgender women. Emilia worked at Fenway for 7 years, first as a Quality Control and Regulatory Assistant mainly involved with biomedical HIV prevention trials, before serving as the Program Associate for The Network for LGBT Health Equity, a network instrumental in many national LGBT health policy improvements. She is also involved with the Massachusetts Transgender Political Coalition, serving as a Steering Committee member and the Policy Committee Co-Chair, an organization largely responsible for the recent passage of the Trans Rights Bill. Additionally she serves as a member of the Massachusetts Commission on Gay, Lesbian, Bisexual and Transgender Youth, Co-Chair of the Recommendations Committee. Emilia received a Bachelor’s degree from Northeastern University. There she served as President of the LGBTQ student group where she planned programs such as Pride Week, Transgender Day of Remembrance, and AIDS Week. In addition, she advocated for LGBTQ inclusive policies and programming on campus such as a Gender Neutral Housing program, an LGBTQ Center and the expansion of Women’s Studies to Women, Gender and Sexuality Studies. Emilia recently earned a Master of Public Policy and Master of Business Administration in health policy and management from the Brandeis Heller School School for Social Policy and Management.

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