Lack of sexual orientation and gender identity data and research affecting cancer care of LGBTQ+ community


Kyra Meister

Alexandra, Va. The percentage of U.S. adults who self-identify as LGBTQ+ has doubled since 2012 to 7.1%.1 Despite this uptick, there is a significant lack of data and research on sexual orientation and gender identity when it comes to health care. People who identify as LGBTQ+ may have a higher risk of getting cancer than those who identify as heterosexual and/or cisgender. On Thursday, May 19, the Prevent Cancer Advocacy Workshop convened conversations addressing these disparities.

“You don’t fix what you don’t measure,” said Scout, Ph.D., the Executive Director of the National LGBT Cancer Network, in reference to how the lack of sexual orientation and gender identity data and research on LGBTQ+ individuals’ experience with their health care providers affects their outcome of care. In his keynote address, Scout discussed the state of the LGBTQ+ community as it relates to cancer care, best practices for data collection, such as encouraging data collection in research, trials and electronic health records (EHRs), and how the National LGBT Cancer Network promotes the creation of welcoming spaces across the health care continuum.

Other speakers included:

  • Chris Chamars, Program and Partnership Specialist for GRYT Health, discussed their experiences navigating the health care space as a patient, former health care professional and advocate.
  • Christina N. Dragon, MSPH, CHES, Measurement and Data Lead for the Sexual and Gender Minority Research Office at the National Institute of Health, gave an overview of how to measure sex, gender identity and sexual orientation from the National Academies of Sciences, Engineering and Medicine Consensus Study Report.
  • Mandi L. Pratt-Chapman, Ph.D., Associate Professor, Medicine at the School of Medicine and Health Sciences, Associate Professor, Prevention and Community Health at the Milken Institute School of Public Health and Associate Center Director, Patient-Centered Initiatives and Health Equity at the GW Cancer Center at The George Washington University, spoke on content and outcomes of a novel learning intervention to train cancer care professionals on LGBTQ+-affirming care.
  • Rachel Waller, M.D. and Ari Laoch of Health Brigade, spoke about data on screening discrepancies between LGBTQ+ and the general population, cancers that are more common in the LGBTQ+ community and how to provide a safer medical environment for the LGBTQ+ community.

“The Foundation remains committed to increasing education and action amongst patient advocacy groups,” said Caitlin Kubler, Director of Policy and Advocacy at the Prevent Cancer Foundation. “Conversations and contributions from our workshop will help us move forward in raising awareness of cancer screening disparities in the LGBTQ+ community.”

If you missed the Advocacy Workshop, you can watch the full video here. A list of resources provided by speakers from the workshop can be found at

The 2022 Prevent Cancer Advocacy Workshop thanks its sponsors:


  • Exact Sciences 
  • Gilead Sciences


  • Genentech


  • Bristol Myers Squibb 
  • Takeda Oncology


  1. Jones, J. M. (2022, February 18). LGBT identification in U.S. ticks up to 7.1%. Retrieved May 25, 2022, from 


About the Prevent Cancer Foundation® 

The Prevent Cancer Foundation® is the only U.S. nonprofit organization focused solely on saving lives across all populations through cancer prevention and early detection. Through research, education, outreach and advocacy, we have helped countless people avoid a cancer diagnosis or detect their cancer early enough to be successfully treated.

The Foundation is rising to meet the challenge of reducing cancer deaths by 40% by 2035. To achieve this, we are committed to investing $20 million for innovative technologies to detect cancer early and advance multi-cancer screening, $10 million to expand cancer screening and vaccination access to medically underserved communities, and $10 million to educate the public about screening and vaccination options. For more information, please visit