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
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.