The Role of Human Factors in Home Health Care

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The Role of Human Factors in Home Health Care Workshop Summary Steve Olson, Rapporteur Committee on the Role of Human Factors in Home Health Care Committee on Human-Systems Integration Division of Behavioral and Social Sciences and Education

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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Govern- ing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineer- ing, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropri- ate balance. This study was supported by Contract No. HHSP23320042509XI, task order HHSP233200800004T, between the National Academy of Sciences and the U.S. Department of Health and Human Services. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project. International Standard Book Number-13: 978-0-309-15629-5 International Standard Book Number-10: 0-309-15629-7 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. Copyright 2010 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Research Council. (2010). The Role of Human Factors in Home Health Care: Workshop Summary. Steve Olson, Rapporteur. Committee on the Role of Human Factors in Home Health Care, Committee on Human- Systems Integration. Division of Behavioral and Social Sciences and Education. Washington, DC: The National Academies Press.

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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Acad- emy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is presi- dent of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Insti- tute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sci- ences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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COMMITTEE ON THE ROLE OF HuMAN FACTORS IN HOME HEALTH CARE David H. Wegman (Chair), School of Health and Environment, University of Massachusetts–Lowell Sara Czaja, College of Engineering and Department of Psychiatry and Behavioral Sciences, University of Miami Miller School of Medicine K. Eric DeJonge, Washington Hospital Center, Washington, DC Daryle Jean Gardner-Bonneau, Bonneau & Associates, Portage, Michigan Michael Christopher Gibbons, Johns Hopkins University Urban Health Institute, School of Medicine, and Bloomberg School of Public Health Laura N. Gitlin, Jefferson Center for Applied Research on Aging and Health, Thomas Jefferson University Judith Tabolt Matthews, Department of Health and Community Systems, University of Pittsburgh School of Nursing Misha Pavel, Division of Biomedical Engineering, Department of Science and Engineering, Oregon Health and Science University P. Hunter Peckham,1 Donnell Institute of Biomedical Engineering and Orthopaedics, Case Western Reserve University Jon Pynoos, Ethel Percy Andrus Gerontology Center, Davis School of Gerontology, University of Southern California Robert M. Schumacher, User Centric, Inc., Oakbrook Terrace, Illinois Mary Weick-Brady,2 Food and Drug Administration, Rockville, Maryland Jennifer L. Wolff, Johns Hopkins University Bloomberg School of Public Health and School of Medicine Susan B. Van Hemel, Study Director Barbara Wanchisen, Director, Committee on Human-Systems Integration Renée L. Wilson Gaines, Senior Program Assistant 1 Resigned from the committee in March 2010.   Resigned from the committee in May 010. 

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COMMITTEE ON HuMAN-SYSTEMS INTEGRATION William S. Marras1 (Chair), Institute for Ergonomics, Ohio State University Deborah A. Boehm-Davis, Human Factors and Applied Cognition Program, George Mason University Pascale Carayon, Department of Industrial and Systems Engineering, Center for Quality and Productivity Improvement, University of Wisconsin–Madison Don Chaffin,1 Industrial and Operations Engineering and Biomedical Engineering, University of Michigan Nancy J. Cooke, Department of Applied Psychology, Arizona State University Mary (Missy) Cummings, Department of Aeronautics and Astronautics, Massachusetts Institute of Technology Jonathan Grudin, Microsoft Research, Redmond, Washington Waldemar Karwowski, Department of Industrial Engineering and Management Systems, University of Central Florida Steven W.J. Kozlowski, Department of Psychology, Michigan State University Arthur Kramer, Beckman Institute, University of Illinois Matthew Rizzo, Department of Neurology, University of Iowa Hospitals and Clinics Thomas F. Sanquist, Pacific Northwest National Laboratory, Seattle Thomas B. Sheridan,1 Massachusetts Institute of Technology (Emeritus) Philip J. Smith, Institute for Ergonomics, Ohio State University David H. Wegman, University of Massachusetts–Lowell (Emeritus) Howard Weiss, Department of Psychological Sciences, Military Family Research Institute, Purdue University Barbara Wanchisen, Director Mary Ellen O’Connell, Associate Director Matthew McDonough, Senior Program Assistant (through December 2009) Christie R. Jones, Program Associate (from December 2009) 1Member, National Academy of Engineering. i

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Preface In the United States, health care devices, technologies, and care prac- tices are rapidly moving into the home. This transition, which is likely to accelerate in the future, has raised a host of issues that have received insufficient attention in the past. Care recipients and caregivers have partic- ular capabilities and limitations that can shape home health care processes and procedures. Very few homes have been designed for the delivery of health care, yet the aging of the population and changes in medical practice and health care reimbursement are leading to greater reliance on care at home. Medical equipment and technologies that are designed for hospitals and clinics can be ill-suited for use in the home. The community environ- ment can support or detract from home health care. As stated earlier, the rapid growth of home health care has raised many insolved issues and will have consequences that are far too broad for any one group to analyze in their entirety. Yet a major influence on the safety, quality, and effectiveness of home health care will be the set of issues encompassed by the field of human factors research—the discipline of applying what is known about human capabilities and limitations to the design of products, processes, systems, and work environments. For that reason, the Agency for Healthcare Research and Quality (AHRQ) asked the Committee on Human-Systems Integration of the National Research Council to conduct a wide-ranging investigation of the role of human fac- tors in home health care. In response, the multidisciplinary Committee on the Role of Human Factors in Home Health Care was formed to examine a diverse range of behavioral and human factors issues resulting from the increasing migration of medical devices, technologies, and care practices ii

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iii PREFACE into the home. Its goal is to lay the groundwork for a thorough integration of human factors research with the design and implementation of home health care devices, technologies, and practices. As part of its work, the committee conducted a workshop on the role of human factors in home health care on October 1-2, 2009, in Washington, DC. The workshop and this report represent the culmination of the first phase of the study. The second phase will culminate in a consensus report containing the committee’s conclusions and recommendations concerning the best use of human factors in home health care. In addition, the commit- tee is overseeing the preparation of a designers’ guide for the use of health information technologies in home care. The landmark report To Err Is Human: Building a Safer Health System, published in 2000 by the Institute of Medicine, found that illness, injuries, and other adverse health consequences often result from poor interactions between care recipients and the health care delivery system. By highlight- ing the importance of human factors in the inpatient hospital setting, that report led to a broad array of reforms aimed at improving the quality of health care delivery. The committee’s hope is that this workshop report and its consensus report will motivate similar reforms for home health care, even as the terrain of the health care delivery system is undergoing dramatic changes. In the future, individuals will play a greater role in managing their own health care needs and those of their family members at home and in the com- munity. The extent to which human factors research is incorporated into home-based devices, technologies, and practices will have a big influence on whether greater reliance on home health care proves to have beneficial or detrimental effects on people’s lives. The committee members identified presenters, organized the agenda, introduced presentations, and facilitated discussion, although they did not participate in the writing of this report. This summary reflects their diligent efforts, the excellent presentations by other experts at the workshop, and the insightful comments of the many workshop participants. The planning efforts of the committee were greatly assisted by the interest and support of Kerm Henriksen, AHRQ human factors advisor for patient safety, and Teresa Zayas-Caban, senior manager, Health IT at AHRQ, which are much appreciated. Henriksen also provided some very helpful introductory remarks and closing comments at the workshop. The workshop included discussions led by Paul Crawford of Intel, Margaret Quinn of the University of Massachusetts–Lowell, and Carol Raphael of the Visiting Nurse Service of New York. Their contributions are greatly appreciated. This workshop summary has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance

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ix PREFACE with procedures approved by the Report Review Committee of the National Research Council. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We thank the following individuals for their review of this report and the attached papers: Jane Behr-Lehman, Steinhardt Department of Occupational Therapy, New York University; Deborah A. Boehm-Davis, Human Factors and Applied Cognition Program, George Mason University; R. Paul Crawford, Product Research and Inno- vation, Digital Health Group, Intel Corporation; Steven Landers, Center for Home Care and Community Rehabilitation, Cleveland Clinic; Suzanne Mintz, President and Chief Executive Officer, National Family Caregiv- ers Association, Kensington, MD; Marcia Nusgart, Nusgart Consulting, Bethesda, MD; Terrance J. O’Shea, Digital Health Group, Intel Corporation; Denise C. Park, Center for Vital Longevity, University of Texas at Dallas; Richard W. Pew, BBN Technologies, Cambridge, MA; Eduardo Salas, Insti- tute for Simulation and Training, University of Central Florida; Susan Stark, Program of Occupational Therapy, Department of Therapy and Neurology, Washington University School of Medicine; and Bernadette Wright, The Lewin Group, Falls Church, VA. Although the reviewers listed above provided many constructive com- ments and suggestions, they were not asked to endorse the content of the report, nor did they see the final draft of the report before its release. The review of this report was overseen by Matthew Rizzo of the University of Iowa. Appointed by the National Research Council, he was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review com- ments were carefully considered. Responsibility for the final content of this report rests entirely with the author and the institution.

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Contents PART I: WORKSHOP SuMMARY 1 INTRODUCTION 3 The Role of Human Factors in Home Health Care, 3 Workshop Themes, 6 Organization of the Report, 6 2 THE PEOPLE WHO RECEIVE AND PROVIDE HOME HEALTH CARE 9 Fitting People to Health Care in Their Home Environments, 9 Informal Caregivers: Family, Friends, Others, 13 Formal Caregivers, 19 Discussion, 25 3 HOME HEALTH CARE TASKS AND TOOLS 29 Home Caregiving Tasks, 29 Medical Devices and Equipment, 32 Information Technology, 39 Discussion, 45 4 THE ENVIRONMENTS OF HOME HEALTH CARE 47 The Physical Environment and Home Health Care, 47 xi

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xii CONTENTS The Impact of Cultural, Social, and Community Environments on Home Health Care, 53 Finance, Regulation, and Clinical Models, 58 Discussion, 63 5 CONCLUDING DISCUSSION 67 Committee Perspective, 68 Sponsor Perspective, 69 PART II: WORKSHOP PAPERS 6 THE HEALTH CARE CHALLENGE: MATCHING CARE TO PEOPLE IN THEIR HOME ENVIRONMENTS 73 Neil Charness The Shift to Home Health Care, 73 The Health Care Environment, 76 The Person-Environment Fit Framework, 77 Demographics of Health Care Users, 82 Perceptual, Cognitive, and Psychomotor Capabilities of Users, 91 User and Provider Attitudes Toward Health Care and Health Care Technology, 95 Examples of Constraints in Technology Use: Handheld Devices, 104 Human Factors Tools for Assessing and Designing Person-Environment Fit, 105 Gaps in Knowledge, 107 Recommendations, 108 About the Author, 110 References, 110 7 INFORMAL CAREGIVERS IN THE UNITED STATES: PREVALENCE, CAREGIVER CHARACTERISTICS, AND ABILITY TO PROVIDE CARE 117 Richard Schulz and Connie A. Tompkins Dimensions of Informal Caregiving, 118 Roles and Responsibilities of Caregivers, 123 Ability to Provide Care, 129 Looking to the Future, 135 About the Authors, 138 References, 138

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xiii CONTENTS 8 MEDICAL DEVICES IN HOME HEALTH CARE 145 Molly Follette Story Background, 146 Types of Home Health Care Devices, 148 Emergent Technologies in Home Health Care, 151 Human Factors Issues for Home Health Care Devices, 153 Application of Human Factors to Home Health Care Devices, 165 Human Factors Assessment, 166 Future Directions for the Field, 167 Conclusions, 169 About the Author, 170 References, 170 9 INFORMATION TECHNOLOGY AND SYSTEMS IN HOME HEALTH CARE 173 George Demiris Telehealth Applications for Home-Based Disease Management, 174 Web-Based Communities for Home Care Patients, 177 Personal Health Records, 179 Robotic Applications, 181 Smart Homes, 182 Human Factors Challenges and Considerations, 183 Discussion, 191 About the Author, 195 References, 195 10 THE PHYSICAL ENVIRONMENT AND HOME HEALTH CARE 201 Jonathan Sanford The Role of the Environment in Independent Living and Home Health Care, 203 Prosthetic Interventions: Home Modifications to Improve Activity Outcomes, 206 Therapeutic Interventions: Technologies to Improve Health Management and Treatment, 215 New Concepts in Housing: Integrating Prosthetic and Therapeutic Interventions in a Home Environment, 217 Barriers to Adoption of Housing Innovation, 221 Policy Changes to Increase Adoption of Housing Innovation, 227 Toward an Agenda for Research on the Physical Environment and Home Health Care, 232

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xi CONTENTS Conclusions, 237 About the Author, 239 References, 239 11 IMPACT OF CULTURAL, SOCIAL, AND COMMUNITY ENVIRONMENTS ON HOME CARE 247 Steen M. Albert Home Care and the Social-Ecological Model, 249 The Cultural Context of Home Care, 251 Interpersonal Relationships, 256 Community and Neighborhood Factors, 260 Gaps and Directions for Research, 264 Hypotheses for Future Research, 268 About the Author, 270 References, 270 12 EFFECTS OF POLICY, REIMBURSEMENT, AND REGULATION ON HOME HEALTH CARE 275 Peter A. Boling The Landscape of Home Health Care, 275 Five Serious Problems of Long-Term Home Health Care, 282 Evidence of Value from Medically Led Home Care Teams, 290 Future Policy Directions, 292 Professional Workforce Development and Other Possible Barriers, 296 About the Author, 299 References, 299 Appendix: Workshop Agenda and Participants 303