Goodby, Alex W., Olsen, LeighAnne, McGinnis, Michael. "8 Clinical Data as the Basic Staple of Health Learning: Ideas for Action." Clinical Data as the Basic Staple of Health Learning: Creating and Protecting a Public Good: Workshop Summary. Washington, DC: The National Academies Press, 2010.
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Clinical Data as the Basic Staple of Health Learning: Creating and Protecting a Public Good - Workshop Summary
Across the 2 days of presentations and discussion, several common themes—listed in Box 8-1 and elaborated below—emerged as issues for particular attention in accelerating progress in the availability and use of clinical data for new insights.
Clarity on the basic principles of clinical data stewardship. The starting point for expanded access and use of clinical data for knowledge development is agreement on some of the fundamental notions to guide the activities for all individuals and organizations with responsibility for managing clinical data. Workshop participants repeatedly mentioned the need for consensus on approaches to such issues as data structure, standards, reporting requirements, quality assurance, timeliness, deidentification or security measures, access, and use procedures—all of which will determine the pace and nature of evidence development.
Incentives for real-time use of clinical data in evidence development. Current barriers to the real-time use of clinical data for new knowledge discussed at the workshop ranged from regulatory and commercial issues to cost and quality issues. Participants suggested the need for a dedicated program of activities, incentives, and strategies to improve the methods and approaches, their testing and demonstration, the cooperative decision making on
Workshop Common Themes
Clarity on the basic principles of clinical data stewardship.
Incentives for real-time use of clinical data in evidence development.
Transparency to the patient when data are applied for research.
Addressing the market failure for expanding electronic health records (EHR).
Personal records and portals that center patients in the learning process.
Coordinated EHR user organization evidence development work.
The business case for expanded data sharing in a distributed network.
Assuring publicly funded data are used for the public benefit.
Broader semantic strategies for data mining.
Public engagement in evidence development strategies.