Interventions Needed to Improve Data Collection on Sexual Orientation and Gender Identity in Oncology Practice, Survey Finds

Data Show that Despite Patient Support for Data Collection, Barriers in Healthcare Settings Persist
May 23, 2022

Today, JCO Oncology Practice published a new ASCO study which found that among respondents participating in the survey, most oncology practices do not systematically collect data related to sexual orientation and gender identity (SOGI). The study points to the need to increase understanding about disparities that sexual and gender minorities (SGM) face and the impact of implicit biases, and to improve structural processes related to SOGI documentation. The lack of data collection is a key factor that contributes to barriers in addressing cancer disparities among SGM patients, according to the authors.

“Our findings underscore the critical importance not only of SOGI data collection, but also of multi-level structural interventions to support SGM patients,” said Charles S. Kamen, PhD, co-lead author of the study and co-chair of the ASCO Sexual and Gender Minorities Task Force. “By not systematically collecting SOGI data, healthcare providers may reinforce mistrust, place the onus of disclosure on SGM patients, and exacerbate stigma. By contrast, research has shown that asking about SOGI and creating a welcoming clinical environment may improve health outcomes in SGM cancer patients and ameliorate disparities in treatment and care.”

The article examines findings from a 2020 ASCO survey. The survey showed that less than half of respondents out of a total sample of 257 reported that their institutions collected sexual orientation (SO) or gender identity (GI) data – 40% and 46%, respectively. Over a third reported that their institutions did not collect SO or GI data (34% and 32%, respectively).

Other findings include:

  • Most respondents believed it was important to know patients’ SO and GI (68% and 74%, respectively) to provide quality care
  • Respondents identified institutional culture, provider beliefs and discomfort, electronic medical records, and a lack of resources, training, and time as barriers to SOGI data collection.
  • SOGI data collection was linked to respondents’ beliefs that knowing patient SOGI is an important aspect of providing high-quality care.
  • Leadership support and dedicated resources within the institution to collect the data were related to SOGI data collection processes.

“Based on the findings, we encourage healthcare practices and providers to look at and create opportunities within their workplace culture and training1 programs to support data collection for this historically excluded group,” said Mandi L. Pratt-Chapman, PhD, co-lead author of the study and member of the ASCO Sexual and Gender Minorities Task Force. “While we’ve recognized the need for more inclusive and gender-affirming care, we cannot provide affirming care without knowing who our patients are and what they need. These data are proof that we still have a lot of work to do in moving this forward to achieving equity for SGM people.”

The study’s authors provide recommendations for practices to adopt to facilitate data collection, including:

  • Establishing detailed protocols for data collection
  • Creating a designated space in electronic health records to document SOGI
  • Holding trainings to increase provider and staff cultural competence, including evidence-based tools to reduce implicit bias towards SGM patients and their families
  • Ensuring leadership buy-in to incentivize and/or require SOGI data collection

ASCO and other national organizations have long recognized SGM individuals as a population experiencing health disparities and have called for increased attention to SGM patients in oncology practices and overall healthcare settings. In 2017, ASCO issued comprehensive recommendations for reducing cancer disparities among SGM groups, and specifically highlighted the need to improve data collection to ensure high-quality, equitable cancer care.

In March 2022, the National Academies of Science, Engineering, and Medicine (NASEM) released a report, Measuring Sex, Gender Identity, and Sexual Orientation, with guiding principles — inclusiveness, precision, autonomy, parsimony, and privacy — on how to collect SOGI data based on evidence to date. The report was part of efforts to improve the quality of data collection efforts and advance research and policy around the well-being of the lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI+) population. The report also called on the National Institutes of Health to implement new guidelines to standardize the collection of data on sex, gender, and sexual orientation.

Read the full study.

Stay up to date on ASCO’s work on health equity, diversity, and inclusion with ASCO in Action.


 1. Mandi L. Pratt-Chapman, Kristen Eckstrand, Amorie Robinson, Lauren B. Beach, Charles Kamen, Alex S. Keuroghlian, Scott Cook, Asa Radix, Markus P. Bidell, Daniel Bruner, and Liz Margolies. LGBT Health.