Registries for Evaluating Patient Outcomes

Registries for Evaluating Patient Outcomes

Author: Agency for Healthcare Research and Quality/AHRQ

Publisher: Government Printing Office

Published: 2014-04-01

Total Pages: 385

ISBN-13: 1587634333

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This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.


Key Capabilities of an Electronic Health Record System

Key Capabilities of an Electronic Health Record System

Author: Institute of Medicine

Publisher: National Academies Press

Published: 2003-07-31

Total Pages: 36

ISBN-13: 0309185432

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Commissioned by the Department of Health and Human Services, Key Capabilities of an Electronic Health Record System provides guidance on the most significant care delivery-related capabilities of electronic health record (EHR) systems. There is a great deal of interest in both the public and private sectors in encouraging all health care providers to migrate from paper-based health records to a system that stores health information electronically and employs computer-aided decision support systems. In part, this interest is due to a growing recognition that a stronger information technology infrastructure is integral to addressing national concerns such as the need to improve the safety and the quality of health care, rising health care costs, and matters of homeland security related to the health sector. Key Capabilities of an Electronic Health Record System provides a set of basic functionalities that an EHR system must employ to promote patient safety, including detailed patient data (e.g., diagnoses, allergies, laboratory results), as well as decision-support capabilities (e.g., the ability to alert providers to potential drug-drug interactions). The book examines care delivery functions, such as database management and the use of health care data standards to better advance the safety, quality, and efficiency of health care in the United States.


The Computer-Based Patient Record

The Computer-Based Patient Record

Author: Committee on Improving the Patient Record

Publisher: National Academies Press

Published: 1997-10-28

Total Pages: 257

ISBN-13: 030957885X

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Most industries have plunged into data automation, but health care organizations have lagged in moving patients' medical records from paper to computers. In its first edition, this book presented a blueprint for introducing the computer-based patient record (CPR). The revised edition adds new information to the original book. One section describes recent developments, including the creation of a computer-based patient record institute. An international chapter highlights what is new in this still-emerging technology. An expert committee explores the potential of machine-readable CPRs to improve diagnostic and care decisions, provide a database for policymaking, and much more, addressing these key questions: Who uses patient records? What technology is available and what further research is necessary to meet users' needs? What should government, medical organizations, and others do to make the transition to CPRs? The volume also explores such issues as privacy and confidentiality, costs, the need for training, legal barriers to CPRs, and other key topics.


Families Caring for an Aging America

Families Caring for an Aging America

Author: National Academies of Sciences, Engineering, and Medicine

Publisher: National Academies Press

Published: 2016-11-08

Total Pages: 367

ISBN-13: 0309448093

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Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation's family caregivers provide the lion's share of long-term care for our older adult population. They are also central to older adults' access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.


Improving the Quality of Health Care for Mental and Substance-Use Conditions

Improving the Quality of Health Care for Mental and Substance-Use Conditions

Author: Institute of Medicine

Publisher: National Academies Press

Published: 2006-03-29

Total Pages: 528

ISBN-13: 0309133661

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Each year, more than 33 million Americans receive health care for mental or substance-use conditions, or both. Together, mental and substance-use illnesses are the leading cause of death and disability for women, the highest for men ages 15-44, and the second highest for all men. Effective treatments exist, but services are frequently fragmented and, as with general health care, there are barriers that prevent many from receiving these treatments as designed or at all. The consequences of this are seriousâ€"for these individuals and their families; their employers and the workforce; for the nation's economy; as well as the education, welfare, and justice systems. Improving the Quality of Health Care for Mental and Substance-Use Conditions examines the distinctive characteristics of health care for mental and substance-use conditions, including payment, benefit coverage, and regulatory issues, as well as health care organization and delivery issues. This new volume in the Quality Chasm series puts forth an agenda for improving the quality of this care based on this analysis. Patients and their families, primary health care providers, specialty mental health and substance-use treatment providers, health care organizations, health plans, purchasers of group health care, and all involved in health care for mental and substanceâ€"use conditions will benefit from this guide to achieving better care.


Medical Records and the Law

Medical Records and the Law

Author: William H. Roach Jr.

Publisher: Jones & Bartlett Publishers

Published: 2006-04-18

Total Pages: 613

ISBN-13: 0763764922

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Published in conjunction with the American Health Information Management Association (AHIMA), Medical Records and the Law is the ideal text for programs in HIM as well as a valuable reference for health and legal professionals. The Fourth Edition features an expanded discussion of state laws affecting the use and disclosure of health information and the substantial changes brought about by HIPAA and the growth of electronic health record systems. It also discusses the highly complex interplay of federal and state laws as well as the challenging area of how patient information may be used in connection with medical research involving human subjects.


Beyond the HIPAA Privacy Rule

Beyond the HIPAA Privacy Rule

Author: Institute of Medicine

Publisher: National Academies Press

Published: 2009-03-24

Total Pages: 334

ISBN-13: 0309124999

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In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.


Capturing Social and Behavioral Domains and Measures in Electronic Health Records

Capturing Social and Behavioral Domains and Measures in Electronic Health Records

Author: Institute of Medicine

Publisher: National Academies Press

Published: 2015-01-08

Total Pages: 287

ISBN-13: 0309312450

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Determinants of health - like physical activity levels and living conditions - have traditionally been the concern of public health and have not been linked closely to clinical practice. However, if standardized social and behavioral data can be incorporated into patient electronic health records (EHRs), those data can provide crucial information about factors that influence health and the effectiveness of treatment. Such information is useful for diagnosis, treatment choices, policy, health care system design, and innovations to improve health outcomes and reduce health care costs. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2 identifies domains and measures that capture the social determinants of health to inform the development of recommendations for the meaningful use of EHRs. This report is the second part of a two-part study. The Phase 1 report identified 17 domains for inclusion in EHRs. This report pinpoints 12 measures related to 11 of the initial domains and considers the implications of incorporating them into all EHRs. This book includes three chapters from the Phase 1 report in addition to the new Phase 2 material. Standardized use of EHRs that include social and behavioral domains could provide better patient care, improve population health, and enable more informative research. The recommendations of Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2 will provide valuable information on which to base problem identification, clinical diagnoses, patient treatment, outcomes assessment, and population health measurement.


Our Bodies, Our Data

Our Bodies, Our Data

Author: Adam Tanner

Publisher: Beacon Press

Published: 2017-01-10

Total Pages: 226

ISBN-13: 0807033359

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How the hidden trade in our sensitive medical information became a multibillion-dollar business, but has done little to improve our health-care outcomes Hidden to consumers, patient medical data has become a multibillion-dollar worldwide trade industry between our health-care providers, drug companies, and a complex web of middlemen. This great medical-data bazaar sells copies of the prescription you recently filled, your hospital records, insurance claims, blood-test results, and more, stripped of your name but possibly with identifiers such as year of birth, gender, and doctor. As computing grows ever more sophisticated, patient dossiers become increasingly vulnerable to reidentification and the possibility of being targeted by identity thieves or hackers. Paradoxically, comprehensive electronic files for patient treatment—the reason medical data exists in the first place—remain an elusive goal. Even today, patients or their doctors rarely have easy access to comprehensive records that could improve care. In the evolution of medical data, the instinct for profit has outstripped patient needs. This book tells the human, behind-the-scenes story of how such a system evolved internationally. It begins with New York advertising man Ludwig Wolfgang Frohlich, who founded IMS Health, the world’s dominant health-data miner, in the 1950s. IMS Health now gathers patient medical data from more than 45 billion transactions annually from 780,000 data feeds in more than 100 countries. Our Bodies, Our Data uncovers some of Frohlich’s hidden past and follows the story of what happened in the following decades. This is both a story about medicine and medical practice, and about big business and maximizing profits, and the places these meet, places most patients would like to believe are off-limits. Our Bodies, Our Data seeks to spark debate on how we can best balance the promise big data offers to advance medicine and improve lives while preserving the rights and interests of every patient. We, the public, deserve a say in this discussion. After all, it’s our data.