The ADVANCE collaborative and OCHIN’s Research Team are committed to improving health equity among vulnerable and underserved communities. Through our community health center focused research, we are working to improve outcomes, policy, and primary care delivery for marginalized people across the US. In recognition of National Transgender Awareness Week, we want to share our work to help improve culturally competent care, health, and wellbeing of transgender and gender non-conforming patients accessing care in community health centers.

Published in the Transgender Health JournalInterviews with Patients and Providers on Transgender and Gender Non-Conforming Health Data Collection in the Electronic Health Record (EHR)1 was an OCHIN-led study exploring the complexities surrounding the inclusion of gender identity (GI), including transgender and gender non-conforming (TGNC)  identity, in EHR data collection and how the data can best serve patients and providers. Both patients and providers expressed a need for the EHR to include current pronouns and name and gender identifiers to prevent misgendering by clinic staff and providers.  Further, patients and providers both cited the need for a broader range of birth-assigned sex and gender options. The study found divergence between patients and providers regarding the scope of health information to be collected, as well as who should be tasked with the data collection. This study was recently cited in an article in Annals of Family Medicine describing best practices for communicating with non-binary patients led by Alex Keuroghlian at ADVANCE partner organization Fenway Health.  The full article is available here.

ADVANCE partners are currently working on a study titled, “Comparative Effectiveness Research to Improve the Health of Sexual and Gender Minority Patients through Cultural Competence and Skill Training of Community Health Center Providers and Non-Clinical Staff.”2 Led by Fenway Health in Boston, in partnership with OCHIN, the Alliance of Chicago, and the Association of Asian Pacific Community Health Organizations (AAPCHO), and funded by the Patient Centered Outcomes Research Institute (PCORI), this study aims to evaluate the efficacy of sexual orientation and gender identity (SOGI) training and the role of culturally competent trainings in improving health outcomes and patient satisfaction for sexual and gender minority patients in community health centers.  The study will include key informant interviews with health center staff and LGBT, heterosexual, and cisgender patients; evaluation and development of the SOGI training for non-clinical staff, clinicians, and administrators; and comparison of quality measures from clinics that received training versus those that did not.

ADVANCE is also working in collaboration with Kaiser Permanente Center for Health Research, on a study titled, “A Community View of the Health of Gender Minorities.”3 The goal of this project is to use data elements in the EHR to lay the foundation to construct one of the largest cohorts of gender minorities known to date. The cohort includes individuals seeking care within both integrated health (Kaiser Permanente) and community health (OCHIN collaborative members) settings and with the ability to group patients by demographic characteristics or a series of selected health outcomes. This study will use a novel combination of validated transgender-related diagnosis codes, lab-tests, medications prescribed, self-reported gender identity, and/or participation in a transgender health program to identify gender minority patients and will compare the combined cohort of gender minorities, with regard to demographic characteristics, health care access and utilization, and clinical characteristics, to a population of cisgender- matched controls.

OCHIN also leads the PCORI funded ADVANCE Health Disparities Collaborative Research Group4 or CRG which brings together several Clinical Research Networks (CRNs) and Patient Powered Research Networks (PPRNs) to collaborate on proposal development and funding for research focused on minority populations (racial and ethnic, SOGI) and social determinants of health. The CRG led development of our current studies in sexual and gender minority populations and we are pleased to announce we have received a fourth year of funding for the CRG’s continuing work.

Findings from ADVANCE research have informed best practices and training for SOGI data collection and documentation for OCHIN members and research partners.  OCHIN member organizations also learn from one another and share strategies for delivering culturally competent care to sexual and gender minority patients at our annual Learning Forum. We plan to keep actively developing and sharing our research through ADVANCE collaborative partners. If you’re interested in taking part, ask William Pinnock at pinnockw@ochin.org about our CRG and how you can get involved!

Authors: Rebecca Block, MJ Dunne, William Pinnock, Tiffany Prescott, Mary Frances Ritchie, Anna Templeton

Notes:

  1. Dunne, M.J, Raynor, L. A., Cottrell, E. K., Pinnock, W. J. A. (2017). Interviews with patients and providers on transgender and nonconforming health data collection in the electronic health record. Transgender Health, 2(1), 1-7.
  2. Kenneth Mayer, MD; Brigit Hatch, MD; MJ Dunne, MA. Contact MJ Dunne at dunnem@ochin.org
  3. Mark A. Schmidt, PhD; Dagan Wright, PhD, Molly Krancari, MPH, MA. Contact Molly at krancarim@ochin.org
  4. John Heintzman, MD, MPH; Melanie Canterberry, PhD; Nate Warren, MPH; Lindsey Rudov; William Pinnock, MS; Contact William Pinnock at pinnockw@ochin.org