Implementing Findable, Accessible, Interoperable, Reusable (FAIR) Principles in Child and Adolescent Mental Health Research: Mixed Methods Approach
JMIR Mental Health, vol. 11, pp. e59113
Abstract
Background: The FAIR (Findable, Accessible, Interoperable, Reusable) data principles are a guideline to improve the reusability of data. However, properly implementing these principles is challenging due to a wide range of barriers. objectives: To further the field of FAIR data, this study aimed to systematically identify barriers regarding implementing the FAIR principles in the area of child and adolescent mental health research, define the most challenging barriers, and provide recommendations for these barriers. Methods: Three sources were used as input to identify barriers: (1) evaluation of the implementation process of the Observational Medical Outcomes Partnership Common Data Model by 3 data managers; (2) interviews with experts on mental health research, reusable health data, and data quality; and (3) a rapid literature review. All barriers were categorized according to type as described previously, the affected FAIR principle, a category to add detail about the origin of the barrier, and whether a barrier was mental health specific. The barriers were assessed and ranked on impact with the data managers using the Delphi method. Results: Thirteen barriers were identified by the data managers, 7 were identified by the experts, and 30 barriers were extracted from the literature. This resulted in 45 unique barriers. The characteristics that were most assigned to the barriers were, respectively, external type (n=32/45; eg, organizational policy preventing the use of required software), tooling category (n=19/45; ie, software and databases), all FAIR principles (n=15/45), and not mental health specific (n=43/45). Consensus on ranking the scores of the barriers was reached after 2 rounds of the Delphi method. The most important recommendations to overcome the barriers are adding a FAIR data steward to the research team, accessible step-by-step guides, and ensuring sustainable funding for the implementation and long-term use of FAIR data. Conclusions: By systematically listing these barriers and providing recommendations, we intend to enhance the awareness of researchers and grant providers that making data FAIR demands specific expertise, available tooling, and proper investments.
Authors 13
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Amsterdam UMC Location University of Amsterdam · Amsterdam Public Health · Amsterdam University Medical Centers · University of Amsterdam
Affiliation as printed
Amsterdam Public Health, Digital Health, Amsterdam University Medical Center, Amsterdam, Netherlands
Department of Medical Informatics, Amsterdam University Medical Center, University of Amsterdam, Meibergdreef 9, Amsterdam, 1105 AZ, Netherlands, 31 648499049
Department of Medical Informatics, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, Netherlands
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Affiliation as printed
Praktikon, Nijmegen, Netherlands
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Affiliation as printed
Karakter Child and Adolescent Psychiatry University Centre, Nijmegen, Netherlands
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Emma Kinderziekenhuis · Amsterdam Public Health · Amsterdam University Medical Centers · Vrije Universiteit Amsterdam · University of Amsterdam · Amsterdam UMC Location Vrije Universiteit Amsterdam
Affiliation as printed
Amsterdam Public Health, Mental Health, Amsterdam University Medical Center, Amsterdam, Netherlands
Amsterdam University Medical Center, Vrije Universiteit Amsterdam, Epidemiology and Data Science, Amsterdam, Netherlands
Emma Children's Hospital, Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, Netherlands
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Affiliation as printed
Department of Biological Psychology, Vrije Universiteit Amsterdam, Amsterdam, Netherlands
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Emma Kinderziekenhuis · Amsterdam Public Health · Amsterdam University Medical Centers · University of Amsterdam
Affiliation as printed
Amsterdam Public Health, Mental Health, Amsterdam University Medical Center, Amsterdam, Netherlands
Emma Children's Hospital, Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, Netherlands
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Jacintha M. Tieskens Aachen
Leiden University Medical Center
Affiliation as printed
Leiden University Medical Center Curium-Child and Adolescent Psychiatry, Leiden University Medical Center, Leiden, Netherlands
Leiden University Medical Center Curium–Child and Adolescent Psychiatry, Leiden University Medical Center, Leiden, Netherlands
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Amsterdam Public Health · Amsterdam University Medical Centers · Vrije Universiteit Amsterdam · Amsterdam UMC Location Vrije Universiteit Amsterdam
Affiliation as printed
Amsterdam Public Health, Mental Health, Amsterdam University Medical Center, Amsterdam, Netherlands
Department of Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam University Medical Center, Vrije Universiteit Amsterdam, Amsterdam, Netherlands
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Amsterdam Public Health · Amsterdam University Medical Centers · Vrije Universiteit Amsterdam
Affiliation as printed
Amsterdam Public Health, Mental Health, Amsterdam University Medical Center, Amsterdam, Netherlands
Department of Biological Psychology, Vrije Universiteit Amsterdam, Amsterdam, Netherlands
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Amsterdam Public Health · Amsterdam University Medical Centers · Levvel · Vrije Universiteit Amsterdam · Amsterdam UMC Location Vrije Universiteit Amsterdam
Affiliation as printed
Amsterdam Public Health, Mental Health, Amsterdam University Medical Center, Amsterdam, Netherlands
Department of Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam University Medical Center, Vrije Universiteit Amsterdam, Amsterdam, Netherlands
Levvel, Academic Center for Child and Adolescent Psychiatry, Amsterdam, Netherlands
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Amsterdam UMC Location University of Amsterdam · Amsterdam Public Health · Amsterdam University Medical Centers · University of Amsterdam
Affiliation as printed
Amsterdam Public Health, Digital Health, Amsterdam University Medical Center, Amsterdam, Netherlands
Department of Medical Informatics, Amsterdam University Medical Center, University of Amsterdam, Meibergdreef 9, Amsterdam, 1105 AZ, Netherlands, 31 648499049
Department of Medical Informatics, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, Netherlands
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Amsterdam UMC Location University of Amsterdam · Amsterdam Public Health · Amsterdam University Medical Centers · University of Amsterdam
Affiliation as printed
Amsterdam Public Health, Digital Health, Amsterdam University Medical Center, Amsterdam, Netherlands
Department of Medical Informatics, Amsterdam University Medical Center, University of Amsterdam, Meibergdreef 9, Amsterdam, 1105 AZ, Netherlands, 31 648499049
Department of Medical Informatics, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, Netherlands
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Tinca J. C. Polderman Aachen
University Medical Center Groningen · University of Groningen · Leiden University Medical Center · Amsterdam Public Health · Amsterdam University Medical Centers · Levvel · Vrije Universiteit Amsterdam · Amsterdam UMC Location Vrije Universiteit Amsterdam
Affiliation as printed
Amsterdam Public Health, Mental Health, Amsterdam University Medical Center, Amsterdam, Netherlands
Department of Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam University Medical Center, Vrije Universiteit Amsterdam, Amsterdam, Netherlands
Department of Child and Adolescent Psychiatry, University Medical Center Groningen, University of Groningen, Groningen, Netherlands
Karakter Child and Adolescent Psychiatry University Centre, Nijmegen, Netherlands
Leiden University Medical Center Curium-Child and Adolescent Psychiatry, Leiden University Medical Center, Leiden, Netherlands
Levvel, Academic Center for Child and Adolescent Psychiatry, Amsterdam, Netherlands
Leiden University Medical Center Curium–Child and Adolescent Psychiatry, Leiden University Medical Center, Leiden, Netherlands
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