Digital Data Improvement Priorities for Continuous Learning in Health and Health Care: Workshop Summary

by Institute of Medicine, Roundtable on Value and Science-Driven Health Care, Julia Sanders (Compiler)

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 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.

78 pages, Paperback

First published December 31, 2012

About the author

The National Academy of Medicine (NAM, formerly the Institute of Medicine-IOM) is an American nonprofit, non-governmental organization. The National Academy of Medicine is a part of the National Academies of Sciences, Engineering, and Medicine, along with the National Academy of Sciences (NAS), National Academy of Engineering (NAE), and the National Research Council (NRC).

The National Academy of Medicine provides national advice on issues relating to biomedical science, medicine, and health, and serves as an adviser to the nation to improve health aims to provide unbiased, evidence-based, and authoritative information and advice concerning health and science policy to policy-makers, professionals, leaders in every sector of society, and the public at large.

Operating outside the framework of the U.S. federal government, it relies on a volunteer workforce of scientists and other experts, operating under a formal peer-review system. As a national academy, new members of the organization are elected annually by current members, based on their distinguished and continuing achievements in a relevant field as well as for their willingness to participate actively.