Journal Article

Identification and inclusion of gender factors in retrospective cohort studies: the GOING-FWD framework

El Emam, Khaled, Burnside, Heather, Fullerton/MacCaul, Angie, Klimek, Peter, Dev, Rubee, Dryer, Rachel P., Bacon, Simon, Norris, Colleen M., Raparelli, Valeria, Warkentin, Kyle, Kautzky-Willer, Alexandra, Ward, Liam, Romiti, Giulio Francesco, Sanchez, Maria, Harreiter, Juergen, Alipour, Pouria, Pilote, Louise, Tosti, Giulia, Manion, Rachael, Smith, Jeanette, Leon, Raquel Gomez De, Lefkowitz, Myra, Tadiri, Christina P., Sapir-Pichhadze, Ruth, Schiebinger, Londa, Hemani, Salima, Gayoso, Sonia, Parry, Monica, Azizi, Zahra, Lindner, Simon D., Lucas, Ana Maria, Jalal, Sabeena, Tucci, Claudia, Abrahamowicz, Michal, Clair, Carole, Herrero, Maria Trinidad, Stojanovic, Jovana, Muñoz, Leah, Deschinger, Carola, Humphries, Karin H, Keir, Ann, Laučytė-Cibulskiene, Agne, Hart, Donna, Regitz-Zagrosek, Vera, Amador, Sandra, Hartman/Nickerson, Nicole, Fishman, Jennifer, Kublickiene, Karolina, Gisinger, Teresa, Nieto, Raúl, Vecchia, Alexia Della, Bender, Uri, Rochel, Cristina

2021

Overview

Gender refers to the socially constructed roles, behaviours, expressions and identities of girls, women, boys, men and gender diverse people. Gender-related factors are seldom assessed as determinants of health outcomes, despite their powerful contribution. The Gender Outcomes INternational Group: to Further Well-being Development (GOING-FWD) project developed a standard five-step methodology applicable to retrospectively identify gender-related factors and assess their relationship to outcomes across selected cohorts of non-communicable chronic diseases from Austria, Canada, Spain, Sweden. Step 1 (identification of gender-related variables): Based on the gender framework of the Women Health Research Network (ie, identity, role, relations and institutionalised gender), and available literature for a certain disease, an optimal ‘wish-list’ of gender-related variables was created and discussed by experts. Step 2 (definition of outcomes): Data dictionaries were screened for clinical and patient-relevant outcomes, using the International Consortium for Health Outcome Measurement framework. Step 3 (building of feasible final list): a cross-validation between variables per database and the ‘wish-list’ was performed. Step 4 (retrospective data harmonisation): The harmonisation potential of variables was evaluated. Step 5 (definition of data structure and analysis): The following analytic strategies were identified: (1) local analysis of data not transferable followed by a meta-analysis combining study-level estimates; (2) centrally performed federated analysis of data, with the individual-level participant data remaining on local servers; (3) synthesising the data locally and performing a pooled analysis on the synthetic data and (4) central analysis of pooled transferable data. The application of the GOING-FWD multistep approach can help guide investigators to analyse gender and its impact on outcomes in previously collected data.

• Publisher: BMJ Publishing Group Ltd,BMJ Publishing Group LTD,BMJ Publishing Group
• Subject: Anxiety / Cardiovascular disease / Caregivers / Chronic illnesses / Clinical outcomes / Cohort analysis / cohort study / Computer science / Consortia / Data dictionaries / Epidemiology / Exercise / Gender identity / health policies and all other topics / Institutionalization / Medical research / Minority & ethnic violence / Nutrition research / Patients / Personality / Personality traits / Practice / Public health / Questionnaires / Roles / Sexual orientation / Social support / Stress / Well being / Womens health / Working hours