Community Engagement Workshop (2024) Resources
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Data Policy (Privacy and Ethics) and Resources
- The NIH-supported Data Sharing Resources list, which lists NIH-supported repositories for sharing or accessing data that are searchable by a variety of fields, including subject area, model system, access type, and properties of the repository. It’s maintained by the NIH BioMedical Informatics Coordinating (BMIC) Committee through NLM.
- The NIH Dataset Catalog, which is a catalog of biomedical datasets from various repositories for users to search, retrieve, and connect with datasets to accelerate discovery. The effort to develop this resource is led by NLM and the catalog is currently in beta. It would be wonderful to get feedback from attendees around the catalog and ideas they have for enhancing its utility and increasing its visibility to their communities.
- NIH Data Management and Sharing Policy
- Findability, Accessibility, Interoperability and Reusability (FAIR Data) Principles
- The Global Alliance for Genomics and Health (GA4GH) - Ethics Toolkit
- National Institutes of Health (NIH) Data Sharing Policy and Repository Guidance
- National Human Genome: ELSI (Ethical, Legal, and Social Implications) Research Program
- All of Us Program: Precision Medicine Initiative: Privacy and Trust Principles
- DataONE - Data Management Education Modules
Community Engagement
- Leveraging Community Information Exchanges for Equitable and Inclusive Data: The CIE® Data Equity Framework
- The report coming out of the White House Office of Science and Technology Policy on Implementation of Federal Prize and Citizen Science Authority: Fiscal Years 2021-2022. The top matter for the report has some really helpful discussion on methodologies for community engagement and how they relate to different federal mechanisms for fostering innovation through engagement.
- All of Us Program: Communications and Engagement Partners
- Ten Simple Rules for creating a global network in Computational Biology
- University of Maryland Guide to Diversity, Equity, and Inclusion in Research
- University of California Los Angeles Data Equity Center Technical Assistance and Resources
- 6 Ways to Increase Equity & Racial Justice in Community Engagement
- Pennsylvania State Center for Economic and Community Development Community Engagement Toolbox
- Community-Based Participatory Research (CBPR) Resources - Centers for Disease Control and Prevention
- Comparison of consumers’ views on electronic data sharing for healthcare and research
- Factors affecting willingness to share electronic health data among California consumers
- Data governance requirements for distributed clinical research networks: triangulating perspectives of diverse stakeholders
- A Novel Stakeholder Engagement Approach for Patient-centered Outcomes Research
- Engagement in PCORnet Research Networks
- Through Patients' Eyes: Regulation, Technology, Privacy, and the Future
- Added Value from Secondary Use of Person Generated Health Data in Consumer Health Informatics
Open Access Datasets and Accessibility
- National Library of Medicine: dbGaP - Database of Genotypes and Phenotypes
- National Cancer Institute: The Cancer Genome Atlas (TCGA)
- Data Visualization Accessibility Resources
- Appyters turn Jupyter Notebooks into fully functional standalone web-based bioinformatics applications. Appyters present to users an entry form enabling them to upload their data and set various parameters for a multitude of data analysis workflows. Once the form is filled, the Appyter executes the corresponding notebook in the cloud, producing the output without requiring the user to interact directly with the code.
- Get-Gene-Set-Go (G2SG) is an interactive web-based application that enables users to fetch gene sets from various Common Fund programs data sources, augment these sets with gene-gene co-expression correlations or protein-protein interactions, perform set operations such as union, consensus, and intersection on multiple sets, as well as visualize and analyze these gene sets in a single session.
- Rummagene is a search engine and a database of gene sets extracted from the supporting materials of research publications listed on PubMed Central (PMC). Currently, Rummagene contains 727,722 gene sets extracted from the supporting tables of 136,840 articles out of ~6M scanned PMC articles.
- RummaGEO enables users of the NCBI Gene Expression Omnibus (GEO) to search the database at the data level. The RummaGEO database contains 135,264 human and 158,062 mouse gene sets automatically generated by computing signatures from 23,395 GEO studies.
- Harmonizome is a collection of processed datasets gathered to serve and mine knowledge about genes and proteins from over 80 major online resources. We extracted, abstracted and organized data into ∼84 million functional associations between genes/proteins and their attributes. The freely available Harmonizome web portal provides a graphical user interface, a web service and a mobile app for querying, browsing and downloading all of the collected data.
Open Access Data Societies
