Download National Institutes of Health - NIH Advisory Committee to the Director PDF

TitleNational Institutes of Health - NIH Advisory Committee to the Director
File Size873.5 KB
Total Pages92
Table of Contents
                            1 Executive Summary
	1.1 Committee Charge and Approach
	1.2 DIWG Vision Statement
	1.3 Overview of Recommendations
	1.4 Report Overview
2 Research Data Spanning Basic Science Through Clinical and Population Research
	2.1 Background
	2.2 Findings
	2.3 Recommendation 1: Promote Data Sharing Through Central and Federated Repositories
		Recommendation 1a. Establish a Minimal Metadata Framework for Data Sharing
		Recommendation 1b. Create Catalogues and Tools to Facilitate Data Sharing
		Recommendation 1c. Enhance and Incentivize a Data Sharing Policy for NIH-Funded Data
	2.4 Recommendation 2: Support the Development, Implementation, Evaluation, Maintenance, and Dissemination of Informatics Methods and Approaches
		Recommendation 2a. Fund All Phases of Scientific Software Development
		Recommendation 2b. Assess How to Leverage the Lessons Learned from the NCBCs
	2.5 Recommendation 3: Build Capacity by Training the Work Force in the Relevant Quantitative Sciences such as Bioinformatics, Biomathematics, Biostatistics, and Clinical Informatics
		Recommendation 3a. Increase Funding for Quantitative Training and Fellowship Awards
		Recommendation 3b. Enhance Review of Quantitative Training Applications
		Recommendation 3c. Create a Required Quantitative Component for All Training and Fellowship Awards
3 NIH Campus Data and Informatics
	3.1 Recommendation 4: Develop an NIH-Wide “On-Campus” IT Strategic Plan
		Recommendation 4a. Administrative Data Related to Grant Applications, Reviews, and Management
			Specific Administrative Data Recommendations
		Recommendation 4b. NIH Clinical Center
			Specific CC Recommendations
		Recommendation 4c. NIH IT and informatics environment: Design for the future
			Specific IT Environment Recommendations
4 Funding Commitment
	4.1 Recommendation 5: Provide a Serious, Substantial, and Sustained Funding Commitment to Enable Recommendations 1-4
5 References
6 Appendices
	6.1 Request for Information
Executive Summary
	Data and Methods
	Frequencies, Priority, and Recommendations
	NIH Request for Information
	The Role of Ripple Effect Communications, Inc.
	About the Data
	Analyses Process
		Code Development
		NIH Responsibility
	Section One: Quantitative and Qualitative Analysis of Critical Issues
		A Quantitative Overview of the Issues
			Issues by Respondent Affiliation
		Quantitative and Qualitative Analysis of Issues and Sub-Issues
			Issue One: Scope of Challenges/Issues
				Research Information Lifecycle
				Challenges/Issues Faced
				Tractability with Current Technology
				Unrealized Research Benefit
				Feasibility of Concrete Recommendations for NIH
			Issue Two: Standards Development
				Reduction of Redundant Data Storage
				Standards According to Data Type
				Metadata Quality Control^
				Collaborative/Community-Based Standards^
				General Guidelines^
			Issue Three: Secondary/Future Use of Data
				Improved Data Access Requests
				Legal and Ethical Considerations
				Patient Consent Procedures
			Issue Four: Data Accessibility
				Central Repository of Research Data
				Models and Technical Solutions
				Investigator Authentication Procedures
			Issue Five: Incentives for Data Sharing
				Acknowledging the Use of Data
				“Academic Royalties” for Data Sharing
			Issue Six: Support Needs
				Analytical and Computational Workforce Growth
				Funding and Development for Growth
	Section Two: Priority Issues
		Priority of Issues
		Priority of Sub-Issues
			Priority of Sub-Issues: Overall
			Priority of Sub-Issues: Self
	Section Three: Respondent Recommendations for NIH
		Code Frequency Comparison
		Qualitative Themes
			Support Needs
				Increase Funding to Develop and Maintain Data Applications
				Increase Professionals in the Field/Workforce Growth
			Data Sharing
				Make Biomedical Data Available
				Incentives to Support Infrastructure
			Standards Development and Data Accessibility
			Feasibility of Recommendations to NIH (Scope of Challenges/Issues)
			Collaborative/Community-Based Standards (Standards Development)
				Collaboration with NIH, Federal Agencies, and Institutions
				Community Collaborations
				Global Collaborations
	A. Full Coding Scheme: Description of Issues and Sub-Issues
		Issue 1: Scope of the Challenges/Issues
		Issue 2: Standards Development
		Issue 3: Secondary/Future Use of Data
		Issue 4: Data Accessibility
		Issue 5: Incentives for Sharing Data
		Issue 6: Support Needs
	B. Summary of Frequency Distribution Across All Sub-Issues
	C. Order of Priority: All Sub-Issues
		Order of Priority: Overall (N=36)
		Order of Priority: Self (N=26)
	6.2 National Centers for Biomedical Computing Mid-Course Program Review Report
	6.3 Estimates of NIH Training and Fellowship Awards in the Quantitative Disciplines

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