Digital health data are the lifeblood of a continuous learning health system. A steady flow of reliable data is necessary to coordinate and monitor patient care, analyze and improve systems of care, conduct research to develop new products and approaches, assess the effectiveness of medical interventions, and advance population health. The totality of available health data is a crucial resource that should be considered an invaluable public asset in the pursuit of better care, improved health, and lower health care costs.

The ability to collect, share, and use digital health data is rapidly evolving. Increasing adoption of electronic health records (EHRs) is being driven by the implementation of the Health Information Technology for Economic and Clinical Health (HITECH) Act, which pays hospitals and individuals incentives if they can demonstrate that they use basic EHRs in 2011. Only a third had access to the basic features necessary to leverage this information for improvement, such as the ability to view laboratory results, maintain problem lists, or manage prescription ordering.

In addition to increased data collection, more organizations are sharing digital health data. Data collected to meet federal reporting requirements or for administrative purposes are becoming more accessible. Efforts such as Health.Data.gov provide access to government datasets for the development of insights and software applications with the goal of improving health. Within the private sector, at least one pharmaceutical company is actively exploring release of some of its clinical trial data for research by others. Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary summarizes discussions at the March 2012 Institute of Medicine (2012) workshop to identify and characterize the current deficiencies in the reliability, availability, and usability of digital health data and consider strategies, priorities, and responsibilities to address such deficiencies.

Contents

• THE NATIONAL ACADEMIES
• PLANNING COMMITTEE ON DIGITAL DATA PRIORITIES FOR CONTINUOUS LEARING
• ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE
• Reviewers
• Preface
• 1. Introduction
  • DATA SOURCES IN THE DIGITAL HEALTH UTILITY
  • MOVING TO A CONTINUOUSLY LEARNING HEALTH SYSTEM
  • WORKSHOP SCOPE AND OBJECTIVES
  • ORGANIZATION OF THE SUMMARY
  • REFERENCES
• 2. Data Quality Challenges and Opportunities in a Learning Health System
  • INTRODUCTION
  • CHALLENGES FOR DATA COLLECTION AND AGGREGATION
  • PATIENT-REPORTED DATA AND MAXIMIZING PATIENT VALUE IN THE LEARNING HEALTH SYSTEM
• 3. Digital Health Data Uses: Leveraging Data for Better Health
  • INTRODUCTION
  • PRACTICE MANAGEMENT
  • CLINICAL RESEARCH
  • TRANSLATIONAL INFORMATICS
  • SUPPORTING PUBLIC HEALTH AND SURVEILLANCE AT THE NATIONAL LEVEL
  • SUPPORTING PUBLIC HEALTH AND SURVEILLANCE AT THE LOCAL LEVEL
• 4. Issues and Opportunities in the Emergence of Large Health-Related Datasets
  • INTRODUCTION
  • THE CHALLENGE OF BIAS IN LARGE HEALTH-RELATED DATASETS
  • MOVING FROM ANALYTICS TO INSIGHTS
  • REFERENCES
• 5. Innovations Emerging in the Clinical Data Utility
  • INTRODUCTION
  • DISTRIBUTED QUERIES
  • DATA HARMONIZATION AND NORMALIZATION
  • DATA LINKAGE
• 6. Strategies Going Forward
  • CURRENT DATA SOURCES: BETTER AWARENESS AND ASSESSMENT
  • DATA INPUT: IMPROVE PATIENT ORIENTATION, QUALITY, AND UTILITY
  • DATA ANALYSIS: IMPROVE ACCESS, TOOLS, AND CAPACITY
  • PUBLIC AND PATIENT ENGAGEMENT: RAMP UP INVOLVEMENT
  • BUILDING A CLINICAL DATA LEARNING UTILITY
  • CLARITY ON GOVERNANCE
  • REFERENCES
• Appendix A Speaker Biographies
• Appendix B Workshop Agenda

Rapporteurs: Claudia Grossmann, Brian Powers, and Julia Sanders.

This study was supported by Contract/Grant No. HHSP23320110009EC between the National Academy of Sciences and the Office of the National Coordinator for Health Information Technology. The views presented in this publication do not necessarily reflect the views of the organizations or agencies that provided support for the project.

Suggested citation:

IOM (Institute of Medicine). 2013. Digital data improvement priorities for continuous learning in health and health care: Workshop summary. Washington, DC: The National Academies Press.

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.