Agreement between medical records and self-reports: Implications for transgender health research


A key priority of transgender health research is the evaluation of long-term effects of gender affirmation treatment. Thus, accurate assessment of treatment receipt is critical. The data for this analysis came from an electronic medical records (EMR) based cohort of transgender individuals. A subset of cohort members were also asked to complete a self-administered survey. Information from the EMR was compared with survey responses to assess the extent of agreement regarding transmasculine (TM)/transfeminine (TF) status, hormone therapy receipt, and type of surgery performed. Logistic regression models were used to assess whether participant characteristics were associated with disagreement between data sources. Agreement between EMR and survey-derived information was high regarding TM/TF status (99%) and hormone therapy receipt (97%). Lower agreement was observed for chest reconstruction surgery (72%) and genital reconstruction surgery (84%). Using survey responses as the “gold standard”, both chest and genital reconstruction surgeries had high specificity (95 and 93%, respectively), but the corresponding sensitivities were low (49 and 68%, respectively). A lower proportion of TM had concordant results for chest reconstruction surgery (64% versus 79% for TF) while genital reconstruction surgery concordance was lower among TF (79% versus 89% for TM). For both surgery types, agreement was highest among the youngest participants. Our findings offer assurance that EMR-based data appropriately classify cohort participants with respect to their TM/TF status or hormone therapy receipt. However, current EMR data may not capture the complete history of gender affirmation surgeries. This information is useful in future studies of outcomes related to gender affirming therapy.

This is a preview of subscription content, log in to check access.


  1. 1.

    Institute of Medicine. The health of lesbian, gay, bisexual, and transgender people: building a foundation for better understanding. Washington, DC: The National Academies Press; 2011.

    Google Scholar 

  2. 2.

    Feldman J, Brown GR, Deutsch MB, Hembree W, Meyer W, Meyer-Bahlburg HFL, et al. Priorities for transgender medical and healthcare research. Curr Opin Endocrinol Diabetes Obes. 2016;23(2):180–7.

    Article  Google Scholar 

  3. 3.

    Reisner SL, Deutsch MB, Bhasin S, Bockting W, Brown GR, Feldman J, et al. Advancing methods for US transgender health research. Curr Opin Endocrinol Diabetes Obes. 2016;23(2):198–207.

    Article  Google Scholar 

  4. 4.

    Reisner SL, Poteat T, Keatley JA, Cabral M, Mothopeng T, Dunham E, et al. Global health burden and needs of transgender populations: a review. Lancet. 2016;388(10042):412–36.

    Article  Google Scholar 

  5. 5.

    Newell SA, Girgis A, Sanson-Fisher RW, Savolainen NJ. The accuracy of self-reported health behaviors and risk factors relating to cancer and cardiovascular disease in the general population: a critical review. Am J Prev Med. 1999;17(3):211–29.

    CAS  Article  Google Scholar 

  6. 6.

    Deutsch MB, Buchholz D. Electronic health records and transgender patients--practical recommendations for the collection of gender identity data. J Gen Intern Med. 2015;30(6):843–7.

    Article  Google Scholar 

  7. 7.

    Roblin D, Barzilay J, Tolsma D, Robinson B, Schild L, Cromwell L, et al. A novel method for estimating transgender status using electronic medical records. Ann Epidemiol. 2016;26(3):198–203.

    Article  Google Scholar 

  8. 8.

    Gardner IH, Safer JD. Progress on the road to better medical care for transgender patients. Curr Opin Endocrinol Diabetes Obes. 2013;20(6):553–8.

    Article  Google Scholar 

  9. 9.

    Quinn VP, Nash R, Hunkeler E, Contreras R, Cromwell L, Becerra-Culqui TA, et al. Cohort profile: study of transition, outcomes and gender (STRONG) to assess health status of transgender people. BMJ Open. 2017;7(12):e018121.

    Article  Google Scholar 

  10. 10.

    Cahill S, Singal R, Grasso C, King D, Mayer K, Baker K, et al. Do ask, do tell: high levels of acceptability by patients of routine collection of sexual orientation and gender identity data in four diverse American community health centers. PLoS One. 2014;9(9):e107104.

    Article  Google Scholar 

  11. 11.

    Goodman M, Steenland NK, Almon ML, Liff JS, Dilorio CK, Butler SO, et al. Prostate cancer treatment ascertained from several sources: analysis of disagreement and error. Ann Oncol. 2012;23(1):256–63.

    CAS  Article  Google Scholar 

  12. 12.

    Owen-Smith AA, Gerth J, Sineath RC, Barzilay J, Becerra-Culqui TA, Getahun D, et al. Association between gender confirmation treatments and perceived gender congruence, body image satisfaction, and mental health in a cohort of transgender individuals. J Sex Med. 2018;15:591–600.

    Article  Google Scholar 

  13. 13.

    Sineath RC, Woodyatt C, Sanchez T, Giammattei S, Gillespie T, Hunkeler E, et al. Determinants of and barriers to hormonal and surgical treatment receipt among transgender people. Transgend Health. 2016;1(1):129–36.

    Article  Google Scholar 

  14. 14.

    Berry MG, Curtis R, Davies D. Female-to-male transgender chest reconstruction: a large consecutive, single-surgeon experience. J Plast Reconstr Aesthet Surg. 2012;65(6):711–9.

    CAS  Article  Google Scholar 

  15. 15.

    Cregten-Escobar P, Bouman MB, Buncamper ME, Mullender MG. Subcutaneous mastectomy in female-to-male transsexuals: a retrospective cohort-analysis of 202 patients. J Sex Med. 2012;9(12):3148–53.

    Article  Google Scholar 

  16. 16.

    Spack NP. Management of transgenderism. JAMA. 2013;309(5):478–84.

    CAS  Article  Google Scholar 

  17. 17.

    Wroblewski P, Gustafsson J, Selvaggi G. Sex reassignment surgery for transsexuals. Curr Opin Endocrinol Diabetes Obes. 2013;20(6):570–4.

    Article  Google Scholar 

  18. 18.

    Zhao JJ, Marchaim D, Palla MB, Bogan CW, Hayakawa K, Tansek R, et al. Surgical site infections in genital reconstruction surgery for gender reassignment, Detroit: 1984-2008. Surg Infect. 2014;15(2):99–104.

    Article  Google Scholar 

Download references


This work would not be possible without continuous support and advice from the Stakeholder Advisory Group, which included representatives of the transgender community and health care providers and researchers who work with transgender people. We thank Dr. Lemuel Arnold, Dr. Nancy Baisch, Dr. John Blosnich, Dr. George Brown, Dr. Robin Dea, Ms. Cheryl Courtney-Evans, Dr. Shawn Giammattei, Ms. Monica Helms, Ms. Cadence Valentine, Mr. Willy Wilkinson, Ms. Savannah Winter and Mr. Evan Young for their valuable input and willingness to collaborate with us.


This research was supported by the Contract AD-12-11-4532 from the Patient Centered Outcome Research Institute and by the Grant R21HD076387 from the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

Author information



Corresponding author

Correspondence to Michael Goodman.

Ethics declarations

Conflict of interest

None of the authors report competing interests.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Gerth, J., Becerra-Culqui, T., Bradlyn, A. et al. Agreement between medical records and self-reports: Implications for transgender health research. Rev Endocr Metab Disord 19, 263–269 (2018).

Download citation


  • Transgender
  • Gender affirmation
  • Medical records
  • Concordance