de Groot Rowdy, van der Graaff Frank, van der Doelen Daniël, Luijten Michiel, De Meyer Ronald, Alrouh Hekmat, van Oers Hedy, Tieskens Jacintha, Zijlmans Josjan, Bartels Meike, Popma Arne, de Keizer Nicolette, Cornet Ronald, Polderman Tinca J C
Department of Medical Informatics, Amsterdam University Medical Center, University of Amsterdam, Meibergdreef 9, Amsterdam, 1105 AZ, Netherlands, 31 648499049.
Amsterdam Public Health, Digital Health, Amsterdam University Medical Center, Amsterdam, Netherlands.
JMIR Ment Health. 2024 Dec 19;11:e59113. doi: 10.2196/59113.
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.
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.
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.
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.
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.
FAIR(可查找、可访问、可互操作、可重用)数据原则是提高数据可重用性的指南。然而,由于存在各种各样的障碍,正确实施这些原则具有挑战性。
为推动FAIR数据领域的发展,本研究旨在系统识别儿童和青少年心理健康研究领域实施FAIR原则的障碍,确定最具挑战性的障碍,并针对这些障碍提供建议。
使用三个来源来识别障碍:(1)3名数据管理人员对观察性医疗结果合作组织通用数据模型实施过程的评估;(2)对心理健康研究、可重用健康数据和数据质量方面的专家进行访谈;(3)快速文献综述。所有障碍按照之前描述的类型进行分类,包括受影响的FAIR原则、一个用于详细说明障碍来源的类别,以及障碍是否特定于心理健康领域。使用德尔菲法与数据管理人员对障碍的影响进行评估和排名。
数据管理人员识别出13个障碍,专家识别出7个障碍,从文献中提取出30个障碍。这导致了45个独特的障碍。最常被归类到障碍的特征分别是外部类型(n = 32/45;例如,组织政策阻止使用所需软件)、工具类别(n = 19/45;即软件和数据库)、所有FAIR原则(n = 15/45)以及非特定于心理健康领域(n = 43/45)。经过两轮德尔菲法后,就障碍得分的排名达成了共识。克服这些障碍的最重要建议是在研究团队中增加一名FAIR数据管理员、提供可访问的分步指南,以及确保为FAIR数据的实施和长期使用提供可持续资金。
通过系统地列出这些障碍并提供建议,我们旨在提高研究人员和资助提供者的认识,即让数据符合FAIR原则需要特定的专业知识、可用的工具和适当的投资。