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Summary As attention is increasingly devoted to U.S. society’s needs for access to health care and health care delivery, one change that requires immediate attention concerns the many aspects of care that are migrating out of formal medical facilities and into the home. Although the costs of care are one driver of this change, there is also recognition that health care delivered at home is valued by patients and, when managed well, can promote healthy living and well-being. These changes in the location of care are involving more people, both professional and lay, who are sometimes performing difficult tasks, with unfamiliar equipment, in environments not designed to support these activities. All of these factors need to be addressed, and among the most critical are the human-systems interactions, also known as human factors. If the demands of providing or self-administering health care exceed a person’s capabilities, then the safety, efficacy, and efficiency of that care will suffer. The Agency for Healthcare Research and Quality asked the National Research Council (NRC) to explore home health care issues through the lens of human factors and make recommendations for improving the situa- tion when health care is provided in the home environment. In this report, the NRC Committee on the Role of Human Factors in Home Health Care examined the wide range of people, tasks, technologies, and environments involved in health care in the home to provide an understanding of the most prevalent and serious threats to safety, the quality of care experi- enced, and care recipient and provider well-being associated with this care. The committee sought to enhance the viability and quality of home-based health care through recommendations that promote systems that success- 1
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2 HEALTH CARE COMES HOME fully accommodate the diversity, strengths, and limitations of humans, both as care recipients and caregivers, and facilitate necessary improvements to the physical environments of homes. The recommendations are organized into four areas: (1) health care technologies, including medical devices and health information technologies involved in health care in the home; (2) caregivers and care recipients; (3) residential environments for health care; and (4) research and development needs. The committee chose not to prioritize the recommendations, as they focus on various aspects of health care in the home and are of comparable importance to the different constituencies affected. HEALTH CARE TECHNOLOGIES Health care technologies include medical devices that are used in the home as well as information technologies related to home-based health care. The four recommendations in this area concern (1) regulating technol- ogies for health care consumers, (2) developing guidance on the structure and usability of health information technologies, (3) developing guidance and standards for medical device labeling, and (4) improving adverse event reporting systems for medical devices. The adoption of these recommenda- tions would improve the usability and effectiveness of technology systems and devices, support users in understanding and learning to use them, and improve feedback to government and industry that could be used to further improve technology for home care. Regulation U.S. government regulations that apply to devices and systems used in home health care have the potential to ensure that sound human factors principles are followed in the design and implementation of these technolo- gies and thus to support the development of usable and accessible devices and systems. Recommendation 1. The U.S. Food and Drug Administration and the Office of the National Coordinator for Health Information Technology should collaborate to regulate, certify, and monitor health care applica- tions and systems that integrate medical devices and health information technologies. As part of the certification process, the agencies should require evidence that manufacturers have followed existing accessibil- ity and usability guidelines and have applied user-centered design and validation methods during development of the product.
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3 SUMMARY Guidance and Standards Developers of information technologies related to home-based health care, as yet, have inadequate or incomplete guidance regarding product content, structure, accessibility, and usability to inform innovation or evo- lution of personal health records or of patient access to information in electronic health records. The lack of guidance in this area, particularly related to the requirements in the home care setting, makes it difficult for developers of personal health records and patient portals to design systems that fully address the needs of consumers. Recommendation 2. The Office of the National Coordinator for Health Information Technology, in collaboration with the National Institute of Standards and Technology and the Agency for Healthcare Research and Quality, should establish design guidelines and standards, based on existing accessibility and usability guidelines, for content, accessibility, functionality, and usability of consumer health information technolo- gies related to home-based health care. The committee found a serious lack of adequate standards and guid- ance for the labeling of medical devices operated by lay users. Furthermore, we found that the approval processes of the U.S. Food and Drug Adminis- tration (FDA) for changing these materials are burdensome and inflexible. Recommendation 3. The U.S. Food and Drug Administration (FDA) should promote development (by standards development organizations, such as the International Electrotechnical Commission, the Interna- tional Organization for Standardization, the American National Stan- dards Institute, and the Association for the Advancement of Medical Instrumentation) of new standards based on the most recent human factors research for the labeling of and ensuing instructional materials for medical devices designed for home use by lay users. The FDA should also tailor and streamline its approval processes to facilitate and encourage regular improvements of these materials by manufacturers. Adverse Event Reporting Systems The committee notes that the FDA’s adverse event reporting systems, used to report problems with medical devices, are not user-friendly, espe- cially for lay users, who generally are not aware of the systems, unaware that they can use them to report problems, and uneducated about how to do so. Improving these systems would increase the FDA’s knowledge of
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4 HEALTH CARE COMES HOME user problems with existing and future devices, supporting its regulation, guidance, and approval processes. Recommendation 4. The U.S. Food and Drug Administration should improve its adverse event reporting systems to be easier to use, to col- lect data that are more useful for identifying the root causes of events related to interactions with the device operator, and to develop and promote a more convenient way for lay users as well as professionals to report problems with medical devices. CAREGIVERS IN THE HOME Health care is provided in the home by formal caregivers (health care professionals), informal caregivers (family and friends), and individuals who self-administer care; each type of care provider faces unique issues. Properly preparing individuals to provide care at home depends on target- ing efforts appropriately to the background, experience, and knowledge of the caregivers. To date, however, home health care services suffer from being organized primarily around regulations and payments designed for inpatient or outpatient acute care settings. Little attention has been given to how different the roles are for formal caregivers when delivering services in the home or to the specific types of training necessary for appropriate, high-quality practice in this environment. Recommendation 5. Relevant professional practice and advocacy groups should develop appropriate certification, credentialing, and/or training standards that will prepare formal caregivers to provide care in the home, develop appropriate informational and training materials for informal caregivers, and provide guidance for all caregivers to work effectively with other people involved. RESIDENTIAL ENVIRONMENTS FOR HEALTH CARE Health care is administered in a variety of nonclinical environments, but the most common one, particularly for individuals outside health care institutions who need the greatest level and intensity of health care services, is the home. The two recommendations in this area encourage (a) modifi- cations to existing housing and (b) accessible and universal design of new housing. The implementation of these recommendations should provide critical infrastructural changes needed to advance the safety and ease of practicing health care in the home. It could improve the health and safety of many care recipients and their caregivers and facilitate adherence to good health maintenance and treatment practices. Ideally, improvements to hous-
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5 SUMMARY ing design would take place in the context of communities that provide transportation, social networking and exercise opportunities, and access to health care and other services. Safety and Modification of Existing Housing The committee found poor appreciation of the importance of modify- ing homes to remove health hazards and barriers to self-management and health care practice and, furthermore, that financial support through federal assistance agencies for home modifications is very limited. The character- istics of the home can present significant barriers to autonomy or in-home care management and present risk factors for poor health, injury, compro- mised well-being, and greater dependence on others. Conversely, supportive physical characteristics of homes, such as grab bars, increased lighting, and communication services, enhance safety and the ability to perform daily health care tasks and to utilize effectively health care technologies that are designed to enhance health and well-being. Recommendation 6. Federal agencies, including the U.S. Department of Health and Human Services and the Centers for Medicare & Med- icaid Services, along with the U.S. Department of Housing and Urban Development and the U.S. Department of Energy, should collaborate to facilitate adequate and appropriate access to health- and safety-related home modifications, especially for those who cannot afford them. The goal should be to enable persons whose homes contain obstacles, hazards, or features that pose a home safety concern, limit self-care management, or hinder the delivery of needed services to obtain home assessments, home modifications, and training in their use. Accessibility and Universal Design of New Housing Almost all existing housing in the United States presents problems for conducting health-related activities because physical features limit inde- pendent functioning, impede caregiving, and contribute to such accidents as falls. In spite of the fact that a large and growing number of persons, including children, adults, veterans, and older adults, have disabilities and chronic conditions that can and should be managed at home, new hous- ing continues to be built that does not account for their needs (current or future). Although existing homes can be modified to some extent to address some of the limitations, a proactive, preventive, and effective approach would address potential problems in the design phase of new and renovated housing, before construction.
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6 HEALTH CARE COMES HOME Recommendation 7. Federal agencies, such as the U.S. Department of Housing and Urban Development, the U.S. Department of Veterans Affairs, and the Federal Housing Administration, should take a lead role, along with states and local municipalities, to develop strategies that promote and facilitate increased housing visitability, accessibil- ity, and universal design in all segments of the market. This might include tax and other financial incentives, local zoning ordinances, model building codes, new products and designs, and related policies that are developed as appropriate with standards-setting organizations (e.g., the International Code Council, the International Electrotechnical Commission, the International Organization for Standardization, and the American National Standards Institute). RESEARCH AND DEVELOPMENT In our review of the research literature, the committee learned that there is ample foundational knowledge to apply a human factors lens to home health care, particularly as improvements are considered to make health care safe and effective in the home. However, much of what is known is not being translated effectively into practice, either in the design of equipment and information technology or in the effective targeting and provision of services to those in need. Consequently, the four recommenda- tions in this area support research and development to address knowledge and communication gaps: (1) research to enhance coordination among all the people who play a role in health care in the home, (2) development of a database of medical devices in order to facilitate device prescription, (3) improved surveys of the people involved in health care in the home and their residential environments, and (4) development of tools for assessing the tasks associated with home-based health care. Health Care Teamwork and Coordination Home-based health care often involves a large number of elements, includ- ing multiple caregivers, support services, agencies, and complex and dynamic benefit regulations, which are rarely coordinated. However, research has shown that coordinating those elements has a positive effect on patient outcomes and costs of care. When successful, care coordination improves communication among caregivers and care recipients and ensures that care recipients obtain appropriate services and resources. Barriers to coordination include insufficient resources available to (a) help people who need health care at home identify and establish connec- tions to appropriate sources of care, (b) facilitate communication and coordi- nation among caregivers involved in home-based health care, and (c) facilitate communication among the care recipients and caregivers.
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7 SUMMARY Recommendation 8. The Agency for Healthcare Research and Quality should support human factors–based research on the identified barriers to coordination of health care services delivered in the home and sup- port user-centered development and evaluation of programs that may overcome these barriers. Medical Device Database It is the responsibility of physicians to prescribe medical devices, but unlike the situation for prescription drugs, typically little information is readily available to guide them in determining the best match between the devices available and a particular care recipient’s needs. In the area of assistive and rehabilitation technologies, annotated databases (such as AbleData) are available to assist physicians in determining the most appro- priate one of several candidate devices for a given patient. Such a database for home health care devices could alleviate prescription questions, but it does not exist at this time. Recommendation 9. The U.S. Food and Drug Administration, in col- laboration with device manufacturers, should establish a medical device database for physicians and other providers, including pharmacists, to use when selecting appropriate devices to prescribe or recommend for people receiving or self-administering health care in the home. Using task analysis and other human factors approaches to populate the medical device database will ensure that it contains information on characteristics of the devices and implications for appropriate care recipient and device operator populations. Characterizing Caregivers, Care Recipients, and Home Environments As delivery of health care in the home becomes more common, more coherent strategies and effective policies are needed to support the work- force of individuals who provide this care. Developing these will require comprehensive understanding of the number and attributes of individuals engaged in providing health care in the home as well as better information about the environment in which care is delivered. Data and data analysis are lacking to accomplish these objectives, although some existing surveys could provide the needed data if they were better designed. Better coordina- tion across government agencies that sponsor surveys and more attention to information about health care that occurs in the home could greatly improve the utility of survey findings for understanding the prevalence and nature of health care delivery in the home.
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8 HEALTH CARE COMES HOME Recommendation 10. Federal health agencies should coordinate data collection efforts to capture comprehensive information on elements relevant to health care in the home, either in a single survey or through effective use of common elements across surveys. The surveys should collect data on the sociodemographic and health characteristics of indi- viduals receiving care in the home, the sociodemographic attributes of formal and informal caregivers and the nature of the caregiving they provide, and the attributes of the residential settings in which the care recipients live. Tools for Assessing Home Health Care Tasks and Operators Persons caring for themselves at home as well as informal and formal caregivers vary considerably in their skills, abilities, attitudes, experience, and other characteristics, such as age, culture/ethnicity, and health literacy. At this time, health care providers lack the tools needed to assess whether particular individuals would be able to perform specific health care tasks at home, and medical device and system designers lack information on the demands associated with health-related tasks performed at home as well as the human capabilities needed to perform them successfully. Recommendation 11. The Agency for Healthcare Research and Quality should collaborate, as necessary, with the National Institute for Dis- ability and Rehabilitation Research, the National Institutes of Health, the U.S. Department of Veterans Affairs, the National Science Founda- tion, the U.S. Department of Defense, and the Centers for Medicare & Medicaid Services to support development of assessment tools custom- ized for home-based health care, designed to analyze the demands of tasks associated with home-based health care, the operator capabilities required to carry them out, and the relevant capabilities of specific individuals. Improvements to health care in the home hold the promise of provid- ing healthy living, comfort, and effective treatment to care recipients and of contributing to a growing and vital part of health care delivery in the United States. The recommendations presented here call for federal leader- ship and improved data collection and analysis in an effort to provide home-based care appropriate to each care recipient and to make the work of caregivers less burdensome. We have also identified many opportunities for researchers and developers to study and use human factors to support positive change and maximize the promise of successful health care at home. We sincerely think that this promise is well within reach.