Data sharing is increasingly recommended as a means of accelerating science by facilitating collaboration, transparency, and reproducibility. While few oppose data sharing philosophically, a range of ...barriers deter most researchers from implementing it in practice. To justify the significant effort required for sharing data, funding agencies, institutions, and investigators need clear evidence of benefit. Here, using the International Neuroimaging Data-sharing Initiative, we present a case study that provides direct evidence of the impact of open sharing on brain imaging data use and resulting peer-reviewed publications. We demonstrate that openly shared data can increase the scale of scientific studies conducted by data contributors, and can recruit scientists from a broader range of disciplines. These findings dispel the myth that scientific findings using shared data cannot be published in high-impact journals, suggest the transformative power of data sharing for accelerating science, and underscore the need for implementing data sharing universally.
Universal access to assessment and treatment of mental health and learning disorders remains a significant and unmet need. There are many people without access to care because of economic, ...geographic, and cultural barriers, as well as the limited availability of clinical experts who could help advance our understanding and treatment of mental health.
This study aims to create an open, configurable software platform to build clinical measures, mobile assessments, tasks, and interventions without programming expertise. Specifically, our primary requirements include an administrator interface for creating and scheduling recurring and customized questionnaires where end users receive and respond to scheduled notifications via an iOS or Android app on a mobile device. Such a platform would help relieve overwhelmed health systems and empower remote and disadvantaged subgroups in need of accurate and effective information, assessment, and care. This platform has the potential to advance scientific research by supporting the collection of data with instruments tailored to specific scientific questions from large, distributed, and diverse populations.
We searched for products that satisfy these requirements. We designed and developed a new software platform called MindLogger, which exceeds the requirements. To demonstrate the platform's configurability, we built multiple applets (collections of activities) within the MindLogger mobile app and deployed several of them, including a comprehensive set of assessments underway in a large-scale, longitudinal mental health study.
Of the hundreds of products we researched, we found 10 that met our primary requirements with 4 that support end-to-end encryption, 2 that enable restricted access to individual users' data, 1 that provides open-source software, and none that satisfy all three. We compared features related to information presentation and data capture capabilities; privacy and security; and access to the product, code, and data. We successfully built MindLogger mobile and web applications, as well as web browser-based tools for building and editing new applets and for administering them to end users. MindLogger has end-to-end encryption, enables restricted access, is open source, and supports a variety of data collection features. One applet is currently collecting data from children and adolescents in our mental health study, and other applets are in different stages of testing and deployment for use in clinical and research settings.
We demonstrated the flexibility and applicability of the MindLogger platform through its deployment in a large-scale, longitudinal, mobile mental health study and by building a variety of other mental health-related applets. With this release, we encourage a broad range of users to apply the MindLogger platform to create and test applets to advance health care and scientific research. We hope that increasing the availability of applets designed to assess and administer interventions will facilitate access to health care in the general population.
Ten simple rules for open human health research Bafeta, Aïda; Bobe, Jason; Clucas, Jon ...
PLOS computational biology/PLoS computational biology,
09/2020, Volume:
16, Issue:
9
Journal Article
Peer reviewed
Open access
About the Authors: Aïda Bafeta Affiliation: Center for Research and Interdisciplinarity (CRI), Université de Paris, INSERM U1284, Paris, France ORCID logo http://orcid.org/0000-0001-8947-7881 Jason ...Bobe Affiliation: Institute for Next Generation Healthcare, New York, New York, United States of America ORCID logo http://orcid.org/0000-0003-1864-8609 Jon Clucas Affiliation: MATTER Lab, Child Mind Institute, New York, New York, United States of America ORCID logo http://orcid.org/0000-0001-7590-5806 Pattie Pramila Gonsalves Affiliation: Sangath, New Delhi, India ORCID logo http://orcid.org/0000-0003-3780-4523 Célya Gruson-Daniel Affiliation: COSTECH, Université de Technologie de Compiègne, Compiègne, France; LabCMO, Université du Québec à Montréal, Université Laval, Montreal, Canada ORCID logo http://orcid.org/0000-0003-4247-4637 Kathy L. Hudson Affiliation: Hudson Works LLC, Washington, District of Columbia, United States of America Arno Klein * E-mail: arno@childmind.org (AK); dule@ailfe.org (DM) Affiliation: MATTER Lab, Child Mind Institute, New York, New York, United States of America ORCID logo http://orcid.org/0000-0002-0707-2889 Anirudh Krishnakumar Affiliation: Center for Research and Interdisciplinarity (CRI), Université de Paris, INSERM U1284, Paris, France ORCID logo http://orcid.org/0000-0002-2764-133X Anna McCollister-Slipp Affiliation: Four Lights Consulting LLC, Washington, District of Columbia, United States of America ORCID logo http://orcid.org/0000-0002-8615-6430 Ariel B. Lindner Affiliation: Center for Research and Interdisciplinarity (CRI), Université de Paris, INSERM U1284, Paris, France Dusan Misevic * E-mail: arno@childmind.org (AK); dule@ailfe.org (DM) Affiliation: Center for Research and Interdisciplinarity (CRI), Université de Paris, INSERM U1284, Paris, France ORCID logo http://orcid.org/0000-0002-0126-2980 John A. Naslund Affiliation: Department of Global Health and Social Medicine, Harvard Medical School, Boston, Massachusetts, United States of America ORCID logo http://orcid.org/0000-0001-6777-0104 Camille Nebeker Affiliation: Department of Family Medicine and Public Health, School of Medicine, University of California San Diego, San Diego, California, United States of America ORCID logo http://orcid.org/0000-0001-6819-1796 Aki Nikolaidis Affiliation: Center for the Developing Brain, Child Mind Institute, New York, New York, United States of America Irene Pasquetto Affiliation: Harvard Kennedy School, Harvard University, Cambridge, Massachusetts, United States of America ORCID logo http://orcid.org/0000-0002-2790-0629 Gabriela Sanchez Affiliation: University of Geneva, Geneva, Switzerland ORCID logo http://orcid.org/0000-0003-4682-1616 Matthieu Schapira Affiliation: Structural Genomics Consortium and Department of Pharmacology & Toxicology, University of Toronto, Toronto, Canada ORCID logo http://orcid.org/0000-0002-1047-3309 Tohar Scheininger Affiliation: Healthy Brain Network, Child Mind Institute, New York, New York, United States of America ORCID logo http://orcid.org/0000-0003-3674-9999 Félix Schoeller Affiliation: Center for Research and Interdisciplinarity (CRI), Université de Paris, INSERM U1284, Paris, France Anibal Sólon Heinsfeld Affiliation: Center for the Developing Brain, Child Mind Institute, New York, New York, United States of America François Taddei Affiliation: Center for Research and Interdisciplinarity (CRI), Université de Paris, INSERM U1284, Paris, France Introduction We are witnessing a dramatic transformation in the way we do science. The well-established, tried and tested rules and regulations for behavioral and biomedical research involving human participants 18 must demonstrate voluntary participation via informed consent 19–22, perform risk assessment to determine if the probability and magnitude of potential harms are balanced against potential benefits, include those who may benefit most from knowledge gained, consider downstream societal implications, conduct an external review of study procedures before initiating any project, and develop additional protections for vulnerable stakeholders. Do not simply delegate consideration of ethical and responsible research practices solely to research ethics boards (also known as institutional review boards IRBs). The Citizen Science Association has also developed and shared materials for conducting an IRB review 28, to help build an ethics review process for the citizen science community.
Wearable devices provide a means of tracking hand position in relation to the head, but have mostly relied on wrist-worn inertial measurement unit sensors and proximity sensors, which are inadequate ...for identifying specific locations. This limits their utility for accurate and precise monitoring of behaviors or providing feedback to guide behaviors. A potential clinical application is monitoring body-focused repetitive behaviors (BFRBs), recurrent, injurious behaviors directed toward the body, such as nail biting and hair pulling, which are often misdiagnosed and undertreated. Here, we demonstrate that including thermal sensors achieves higher accuracy in position tracking when compared against inertial measurement unit and proximity sensor data alone. Our Tingle device distinguished between behaviors from six locations on the head across 39 adult participants, with high AUROC values (best was back of the head: median (1.0), median absolute deviation (0.0); worst was on the cheek: median (0.93), median absolute deviation (0.09)). This study presents preliminary evidence of the advantage of including thermal sensors for position tracking and the Tingle wearable device's potential use in a wide variety of settings, including BFRB diagnosis and management.
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