The Institute of Medicine (IOM) has released a summary of its October 12, 2012 workshop on the collection of sexual orientation and gender identity data in electronic health records.  The summary can be downloaded from the IOM website and will be available in print copies early in 2013.

Presenters at the workshop discussed current practices for collection of sexual orientation and gender identity data in health surveys, health encounters, and electronic health records.  Other presenters discussed both patient and provider perspectives on the collection of such data, and highlighted the need for education and training for all stakeholders.

As the chairperson of the planning committee for the workshop, I summarized the following themes presented and discussed:

1. LGBT people experience significant health care disparities and the Obama administration and HHS are committed to identifying and addressing those disparities through the use of data.

2. To address health care disparities in the LGBT population, it is important to identify and understand the barriers that these Americans face and to determine if non-discrimination policies meant to eliminate those barriers are truly protecting LGBT individuals when they seek healthcare in real-world settings.

3. ““If you are not counted, you do not count.”” The health of every individual depends on disclosing sexual orientation and gender identity, so it is important to educate LGBT people about the need for them to self-identify while at the same time creating a safe environment conducive for doing so.

4. In addition to technical issues about the questions they need to ask their patients, health care providers have their own fears and biases that will require a significant amount of education to address, both on an individual and institutional level.

5. Employee resource groups in an institution can become a powerful and important internal force of change.

6. The use of language in questions about sexual orientation or identity and gender identity is becoming more precise and that will improve the quality of the resulting data collected using these questions.

7. It is important as a matter of principle that data is always collected through a self- identification process and that there is always an opt-out option available to patients.

8. Though the questions or processes for data collection have room for improvement, data collection should start now to better understand the health care issues experienced by LBGT people.

2 thoughts on “Institute of Medicine: Collecting Sexual Orientation & Gender Identity Data in Electronic Health Records

  1. Nice work, Ignatius. I agree this data collection needs to happen, but I still wonder about the potential implications in regard to bias and discrimination when an individual ‘opts out’ of providing this information. It almost seems that once the question has been asked, it will be assumed to be answered in one way or another – in that the person asking the question is liable to make some assumptions about sexual orientation/identity based on a patient’s decision not to answer the question. If the individual being asked is primarily worried about discrimination or bias in their care based on a truthful response, they might choose to mis-report, rather than opt out.


  2. Thanks Matt – yes, as the presenters and participants all noted, we need to do much more education among both patients and providers, and also increase awareness and actual operationalization of non-discrimination policies while we move forward on collecting these data –


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