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Identification and inclusion of gender factors in retrospective cohort studies: the GOING-FWD framework
  1. Valeria Raparelli1,2,
  2. Colleen M. Norris2,
  3. Uri Bender3,
  4. Maria Trinidad Herrero4,
  5. Alexandra Kautzky-Willer5,
  6. Karolina Kublickiene6,7,
  7. Khaled El Emam8,9,10,
  8. Louise Pilote3,11
  9. GOING‑FWD Collaborators
    1. 1Department of Translational Medicine, University of Ferrara, Ferrara, Italy
    2. 2Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada
    3. 3Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada
    4. 4Department of Human Anatomy and Psychobiology, Universidad de Murcia, Murcia, Spain
    5. 5Department of Medicine III, Division of Endocrinology, Medical University of Vienna, Vienna, Austria
    6. 6Department of Clinical Science, Intervention and Technology (CLINTEC), Karolinska Institutet, Stockholm, Sweden
    7. 7Section for Renal Medicine, Karolinska University Hospital, Stockholm, Sweden
    8. 8Electronic Health Information Laboratory, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
    9. 9School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada
    10. 10Replica Analytics Ltd, Ottawa, Ontario, Canada
    11. 11Department of Medicine, Divisions of Clinical Epidemiology and General Internal Medicine, McGill University, Montreal, Quebec, Canada
    1. Correspondence to Dr Louise Pilote; louise.pilote{at}mcgill.ca

    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.

    • epidemiology
    • public health
    • health policies and all other topics
    • cohort study
    http://creativecommons.org/licenses/by-nc/4.0/

    This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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    Footnotes

    • Handling editor Seye Abimbola

    • Collaborators GOING‑FWD Collaborators: Karin H. Humphries; Monica Parry; Ruth Sapir-Pichhadze; Michal Abrahamowicz; Simon Bacon; Peter Klimek; Jennifer Fishman, Vera Regitz-Zagrosek; Londa Schiebinger; Carole Clair; Rachel P. Dryer; Christina P. Tadiri; Zahra Azizi; Rubee Dev; Pouria Alipour; Uri Bender; 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 F. Romiti; Agnė 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.

      GOING‑FWD Co-Principal Investigators: Louise Pilote, McGill University Health Center and McGill University, Canada; Colleen M. Norris, University of Alberta, Canada; Valeria Raparelli, University of Ferrara, Italy.

      GOING‑FWD Site Principal Investigators: Alexandra Kautzky-Willer, Medical University of Vienna, Austria; Karolina Kublickiene, Karolinska Institutet, Sweden; Maria Trinidad Herrero, Universidad de Murcia, Spain.

      GOING-FWD Co-Investigators: Karin H. Humphries, University of British Columbia, Canada; Monica Parry, Lawrence S. Bloomberg Faculty of Nursing, Canada; Ruth Sapir-Pichhadze, McGill University Health Center and McGill University, Canada; Michal Abrahamowicz, McGill University Health Center and McGill University, Canada; Khaled El Emam, University of Ottawa, Canada; Simon Bacon, Concordia University, Canada; Peter Klimek, Medical University of Vienna, Austria; Jennifer Fishman, McGill University, Canada.

      GOING-FWD Scientific Advisory Committee: Vera Regitz-Zagrosek, Charité, University Medicine Berlin, German and University Hospital Zürich, University of Zürich, Switzerland; Londa Schiebinger, Stanford University, USA; Carole Clair, University of Lausanne, Switzerland; Rachel P. Dryer, Yale University, USA.

      GOING‑FWD Early Career Researchers: Christina P. Tadiri, McGill University Health Center and McGill University, Canada; Zahra Azizi, McGill University Health Center and McGill University, Canada; Rubee Dev, University of Alberta, Faculty of Nursing, Canada; Pouria Alipour, McGill University Health Center and McGill University, Canada; Uri Bender, McGill University Health Center and McGill University, Canada; Sabeena Jalal, McGill University Health Center and McGill University, Canada; Alexia Della Vecchia, McGill University Health Center and McGill University, Canada; Jovana Stojanovic, Concordia University, Canada; Salima Hemani, Lawrence S. Bloomberg Faculty of Nursing, Canada; Heather Burnside, Lawrence S. Bloomberg Faculty of Nursing, Canada; Carola Deschinger, Medical University of Vienna, Austria; Juergen Harreiter, Medical University of Vienna, Austria; Simon D. Lindner, Medical University of Vienna, Austria; Teresa Gisinger, Medical University of Vienna, Austria; Giulia Tosti, Sapienza University of Rome, Italy; Claudia Tucci, Sapienza University of Rome, Italy; Giulio Francesco Romiti, Sapienza University of Rome, Italy; Agnė Laučytė-Cibulskiene, Karolinska Institutet, Sweden; Liam Ward, Karolinska Institutet, Sweden; Leah Muñoz, Karolinska Institutet, Sweden; Raquel Gomez De Leon, Universidad de Murcia, Spain; Ana Maria Lucas, Universidad de Murcia, Spain; Sonia Gayoso, Universidad de Murcia, Spain; Raúl Nieto, Universidad de Murcia, Spain; Maria Sanchez, Universidad de Murcia, Spain; Sandra Amador, Universidad de Murcia, Spain; Cristina Rochel, Universidad de Murcia, Spain.

      GOING‑FWD Patient Partners: Donna Hart, Ontario, Canada; Nicole Hartman/Nickerson, Nova Scotia, Canada; Angie Fullerton/MacCaul, Prince Edward Island, Canada; Jeanette Smith, Ontario, Canada; Myra Lefkowitz, Ontario, Canada; Ann Keir, British Columbia, Canada; Kyle Warkentin (caregiver), British Columbia, Canada; Rachael Manion, Ontario, Canada.

    • Contributors VR: conception, design, interpretation of data, drafting of the manuscript and revision; CMN: conception, design, interpretation of data, critical revision; UB: acquisition and analysis; MTH, design, interpretation of data, revision of the draft; AKW: design, interpretation of data, revision of the draft; KK: design, interpretation of data, revision of the draft; KEE: analysis and development of new IT solution, synthetic data; LP: conception, design, interpretation of data, drafting of the manuscript and revision; GOING-FWD Consortium: design contribution, acquisition of data and revision of the draft. All authors read and approved the final manuscript.

    • Funding The GOING-FWD Consortium is funded by the GENDER-NET Plus ERA-NET Initiative (Project Ref. Number: GNP-78): The Canadian Institutes of Health Research (GNP-161904), La Caixa Foundation (LCF/PR/DE18/52010001), The Swedish Research Council (2018-00932) and The Austrian Science Fund (FWF, I 4209). VR was funded by the Scientific Independence of Young Researcher Program of the Italian Ministry of University, Education and Research (RBSI14HNVT).

    • 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.

    • Provenance and peer review Not commissioned; externally peer reviewed.

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