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

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

Abstract

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.

Keywords: cohort study; epidemiology; health policies and all other topics; public health.

Conflict of interest statement

Competing interests: VR, CNM, UB, MTH, AKW, KK, and LP have nothing to disclose; KEE is co-founder, director, and investor in Replica Analytics Ltd, a CHEO Research Institute / University of Ottawa spinoff company that develops data synthesis software.

© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Figures

Figure 1
Figure 1
The GOING-FWD multistep methodology on identification and inclusion of gender factors in retrospective cohort studies. GOING-FWD, Gender Outcomes INternational Group: to Further Well-being Development.
Figure 2
Figure 2
Domains that gender encompasses.
Figure 3
Figure 3
Data structure and potential options for analysis based on transferability of data.

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