The final chapter of the workshop summary combines the remarks made by formal respondents following the panel presentations with observations made during the discussion sessions over the course of the workshop. It thus looks back on the themes of the workshop presented in Chapter 1 and forward to possible future actions for the Forum on Aging, Disability, and Independence.
Hunter Peckham, Donnell Institute Professor of Biomedical Engineering and Orthopaedics at Case Western Reserve University, reflected on the presentations in the panel “Technologies to Promote Activities of Daily Living and Independence” (Chapter 3). Seth Bravin, strategic industries program manager with the IBM Human Ability and Accessibility Center, reflected on the presentations in the panel “Technologies to Promote Community Integration and Participation Through Community Design” (Chapter 4). Marc Perlman, global vice president for health care and life sciences industry at Oracle, reflected on the presentations in the panel “Technologies to Promote Community Integration and Participation Through Social Connectedness” (Chapter 5). Finally, G. P. Li, professor of electrical engineering and computer science, chemical engineering and materials science, and biomedical engineering at the University of California, Irvine, reflected on the presentations in the panel “Health Management and Promotion” (Chapter 6).
P. Hunter Peckham, Ph.D.
Case Western Reserve University
Peckham focused on the problems of affordability and awareness that plague the use of technology by older Americans, including those with disabilities. Devices available two decades ago had more capabilities than devices available now because cost-containment systems are driving manufacturing. The cost margins in facilities such as nursing homes are so small that integrating technologies into those facilities is difficult. Building communities that incorporate the best ideas quickly runs into financial constraints.
New models could make people aware of what technologies are available or on the way and how to make those technologies available to people, Peckham said. Today, many people do not know about technologies until those devices are critically needed, resulting in a crisis. But awareness can drive demand. For example, many corporate presidents have aging parents, and they could help create a greater awareness of the opportunities and needs. The communities involved in aging and disability need to reach out to corporations and other prominent societal institutions to foment change.
Peckham also asked whether the community of people involved with aging and disabilities is talking too much to itself. Everyone at the workshop knows about the magnitude of the problem, but the broader community in general does not.
Forum member Thomas Edes, U.S. Department of Veterans Affairs, mentioned possible simple approaches to supply people with information, such as making the information available at Walmart pharmacies, libraries, or kiosks in public places. People could ask such questions as what to do if they can no longer turn the lights on and off or how to get places in a wheelchair. This information could be complied into an index of frequently asked questions, which could then be made broadly available. Industry could be interested in those answers, as would agencies such as the U.S. Department of Veterans Affairs.
David Dring, SelfHelp, called attention to what he called trigger points—occasions in an individual’s life when he or she is particularly receptive to new information. For example, some companies that specialize in taking baby pictures do all of their marketing in obstetrics units within hospitals. We should think similarly about other people at various stages of their lives and the different kinds and levels of help they need. Then we
should inform/market our services with information and support at those times/trigger points.
Seth Bravin, M.B.A.
IBM Human Ability and Accessibility Center
Bravin called attention to several workplace issues that can have implications for older Americans. Having a centralized budget for accommodations can make a big difference for integration and participation, Bravin said. Without a centralized budget, individual managers need to cover the cost of accommodations, which can severely limit the number of employees with disabilities and the technologies available to those employees.
He also pointed out that IBM has a workplace portal where people can request accommodations for both permanent and temporary disabilities. For example, if someone is recovering from a broken arm, that person can access an appropriately designed computer. Or if someone is pregnant and needs accommodations, or if a webcast needs to be captioned, situational disabilities can be covered.
Finally, IBM developed a mobile application called Access My City for New York City, in which people with disabilities, including mobility limitations, can check whether they will be able to get where they need to go. For example, Bravin, who is deaf, recounted an episode where he was flying to Austin, Texas, and missed a connection in Atlanta because he did not have access to an announcement made over the public address system. With Access My City, he could have captured that information and put it to use, which might have also benefited other people who missed the announcement.
Joseph Agostini said that if a technology works in a subset of the population and has benefits for employers or for the health care system, then it will have legs. Quality and efficiency will go hand in hand. Technologies need to show that they can be cost-effective, or it will be difficult for them to move forward.
Jon Sanford responded that working at home is a good accommodation for many people, but it does not necessarily create participation in the workplace. Social media technologies are a possible solution to that problem because they can involve people in the workplace from remote locations, creating the interactions of physical space in a virtual space.
Forum member Kelly Buckland, National Council on Independent Liv-
ing, pointed to the human rights dimensions of accessibility. Much of the increase of accessibility emerged from a focus on human rights, often pushed by the disability community, not from the development of technology.
Marc Perlman Oracle
The Web is an enabler, said Perlman. It is a transport mechanism, a highway that connects cities, information, health care systems, and consumers. It needs to have standards but also be open so that people can travel on that highway using any type of vehicle that meets their needs. In that way, the Web provides access while making resources available.
People want to be in control when they are traveling on this highway, Perlman continued. They want to control their health care information, schedule office visits, connect with their health care providers, and have security. In a way, the Web is analogous to the smart homes being developed for veterans with disabilities, where the temperature, access, lighting, and security can be controlled by the occupants. Smart homes, like the Web, provide capabilities and opportunities to do interesting things.
People should think about not only their own needs but about those of the people they care for, such as aging parents. Health care, and care in general, is moving outside of health care settings, which requires connectivity, information, and control. There will not be enough health care providers in the future to meet the needs of an aging population. Many different people will become caregivers, and monitoring and care giving will become at least partly automated. And when automation is not sufficient, technology can make sure the right person is there to provide care at the right time.
In the future, the customer experience will involve safety nets, self-care, and personalized information. Through big data techniques, digital footprints will be mined for information to create predictive analytics, which in turn will lead to interventions. For example, someone at risk of suicide can be monitored in multiple ways to gather data that can be used to take preventive measures. New products and new solutions can help people live independently, regardless of what challenges they have, while remaining connected to the resources they need to live well.
In response to a question about how to connect people into the Web who are not now connected, Judy Brewer said people of all ages fall along a continuum of computer literacy and use. The design of technology can
help everyone advance along this spectrum. For example, online registration systems for medical diagnostic procedures can facilitate or hinder access to care. Technology itself can accommodate disabilities so that people are better able to access information or resources. Regardless of their computer literacy, people increasingly will have to use technology, so interfaces need to be as friendly and as usable as possible. One important step may be to provide more opportunities for community-based training to orient people to technology.
Clayton Lewis pointed out that the stakes are high in getting people connected. People who are unable to use technology can have a significantly lower quality of life, an inability to participate in critical activities, and a higher chance of dying in some cases. Some countries have made a societal investment in making sure that people are connected, but the United States has not done that. A major challenge to society is to help people get online so that they do not become second-class citizens in their own country.
The task is complicated, Lewis added, by constant changes in technology. The technologies being used today will not be the same in the future, so the systems people learn in their jobs, for example, will not necessarily be the systems they will use once they are done working. Constant changes in technology raise the stakes, because people will continually need to learn how to use new devices and programs.
Brewer pointed to the substantial amount of work that has been done to support engagement with the health care system as people age, including the work that Lewis has done.
Perlman said that technological connections often have to be as simple as possible so that in some cases people will not even realize they are using the Web. In that way, people with disabilities can focus on the experience—for example, talking with their grandchildren over a video interface—rather than the technology.
Forum member Margaret Campbell, U.S. Department of Education, observed that more needs to be learned about the question of how to get older people and individuals with disabilities online. Equating an 85- or 90-year-old adult with a younger person who has an intellectual disability is not appropriate. Older adults frequently have multiple chronic conditions and impairments such as cognitive deficiencies, visual impairments, hearing impairments, dexterity problems, or generalized frailty, whereas younger people with disabilities typically have one primary disabling condition.
In response to a question about what technologies seniors need, Brewer advocated for standards-based solutions that take a universal design approach. Technological solutions also need to support interoperability with the specialized assistive technologies that some people may need. Clayton advocated the use of technologies that anyone can use, not just older people. Older people with disabilities should be able to participate in the same
activities as everyone else. Perlman suggested a long-term view because many of the technologies in use today are decades old. Platforms should be nonproprietary if possible, which will increase interoperability not only for software but also for devices. Standards-based and interoperable platforms also will spur innovation. No one can predict exactly what needs will exist 10 years or 20 years from today. Thus, a platform-based rather than product-based approach can create flexibility and openness.
Forum member Joe Caldwell, National Council on Aging, pointed out that many healthy-aging programs are built around peer-to-peer support among people who have the same chronic condition. He noted that online health promotion interventions that connect individuals with disabilities and seniors with one another could help address barriers to participating in such programs (for example, lack of transportation, access in rural areas).
G. P. Li, Ph.D.
University of California, Irvine
Entrepreneurship will be critical in getting empowering technologies into the hands of consumers, said Li. In the past, the provision of health care has been top-down. It has been led by physicians and other caregivers. But technology will empower individuals in a bottom-up fashion, just as the Internet has done. The producer and consumer become the same person, which is a paradigm shift in health care.
Technology will also forge a convergence among health care, information, communication, and consumer technologies, said Li. It will make medicine preventive, predictive, personalized, and participatory, as well as bring parity to medicine. To realize this potential, technology needs to be affordable, accessible, and portable. Furthermore, it needs to meet the needs of everyone, not just those who are older or have limitations.
The long-term effectiveness of technology depends on motivating users to continue using the technology. Only then will it have a long-term impact on health. Thus, personalizing technology will be critical to long-term use.
Both business and social entrepreneurs are needed, said Li. There are roles for foundations, community centers, fitness centers, and many other organizations. The problem facing the nation is similar to that of energy efficiency. Just as the nation needs to reduce its energy consumption, it needs to improve the quality of life for older Americans.
One option Li suggested is a volunteer government-approval program like the Energy Star program. When an appliance meets energy efficiency standards, it receives a special label. Technologies for wellness, for the home, and for consumers could receive a similar certification. The one
problem is that the process for such certification can be too lengthy if done through experiment, as in the case of drug approvals. New ways are needed to engage the consumers of such technologies to make decisions quickly.
Li also observed that many cities have Toys “R” Us stores. Comparable stores should be available to provide empowering technologies for older people with disabilities, he said.
Several workshop participants pointed to the need for future convenings to advance the issues discussed at the workshop. For example, Rory Cooper, University of Pittsburgh, suggested organizing a joint meeting with the President’s Council on Competitiveness, because controlling health care costs for older Americans and people with disabilities is a competitive issue. In addition, the AARP and the American Association of People with Disabilities could work collaboratively with the forum and other bodies. Because about 70 percent of assistive technology is paid for out of pocket, noted Cooper, older adults and people with disabilities have strong viewpoints about what to buy.
The two cochairs of the forum—Alan M. Jette, director of the Health and Disability Research Institute at Boston University, and John W. Rowe, professor in the Department of Health Policy and Management at the Columbia University Mailman School of Public Health—concluded the workshop by thanking the presenters and other participants and by lauding the rich set of issues raised over the course of the day. Much of the information presented at the forum was new, fresh, and future oriented, said Rowe. As such, added Jette, the workshop was a great success in stimulating future thought and action. “You have provided a tremendous foundation for the forum members to build on,” Jette said, “to take what we have learned today and move our work toward action steps to begin to make changes.”