Harnessing the Potential of Technology to Enable Community Living and Participation and Optimize Person-Centered Services
The rapidly developing world of affordable personal technologies may provide opportunities to help the workforce in its delivery and coordination of care for older adults and individuals with disabilities. The workshop’s third panel session explored some of the possibilities, with three panelists discussing the use of apps to promote independence and connectedness, the development of accessible transportation technology to increase independence, and ways to engage stakeholders in the design of technology while also bringing technology to the market faster.
Director, Center for Health Enhancement Systems Studies
University of Wisconsin–Madison
David Gustafson of the University of Wisconsin–Madison began his talk by showing a video demonstrating how one elderly widow living alone in her home used a computer program called Elder Tree,1 which was developed by Gustafson and his colleagues, to schedule her day, remind her of appointments, check in on her health status, order pre-
scriptions that she has the option to request be delivered to her home, retrieve directions to places she is not familiar with, keep in touch with her daughter and granddaughter, meet others online to talk about her love of cooking, and schedule a neighbor to shovel her sidewalk and driveway in exchange for cookies and an informal state history lesson. Gustafson characterized Elder Tree as one potential tool for helping older adults and individuals with disabilities remain in their homes and be involved in their communities. Elder Tree, he said, was developed using a community-based participatory research approach he called Asset-Based Community Development, and the program is now being tested in three counties in Wisconsin—one rural, one urban, and one suburban. He commented that prior to starting this project, he had not fully appreciated how his research had been focused so heavily on needs at the expense of considering the assets that older adults bring to the table. Over the course of this project, he and his collaborators interviewed some 300 older adults in the three test communities to identify their assets and needs and interviewed clinicians to find out what they were focusing on when providing care for these same older adults. As an example of the disconnect these interviews identified, Gustafson said that the older adults were saying their concerns were loneliness, difficulty finding out what was happening in the community, and getting to interesting activities, while their health care providers were concerned about preventing falls, addressing dementia, and improving medication adherence. “It is not like either side is wrong—both are absolutely right—but we wanted to help people stay in their homes and improve their quality of life,” said Gustafson, “so we decided to focus on the [concerns of the older adults] and less on the clinical side.”
His group’s previous work in the areas of cancer and addiction used smartphones as the mode of care delivery, but in developing Elder Tree, interviews with older adults showed that using a phone-based application was too complex for this group of potential users, Gustafson said. The Elder Tree computer-based application is much simpler, he explained, and every screen has a button in the upper right hand corner that links to a video tutorial relevant to that part of the system.
To test the system, Gustafson and his colleagues conducted a randomized trial with 400 older adults from the three geographic regions. Half of the participants used Elder Tree, and the other half of the participants went about their lives as usual with no change in their routines. The participants were surveyed at 3, 6, 12, and 18 months, and the results showed positive effects in areas that Gustafson said he never expected Elder Tree to affect, such as reductions in the number of health care visits and in the number of symptoms reported. “Without having any direct relationship with the health care team, it appears that this system is having some
positive effect on [reducing] health care utilization,” said Gustafson, even though the system was not designed to have an effect on utilization.
Participants using Elder Tree also reported various improvements in their quality of life, which, when taken together, argue that this system is well-received and valued by the participants, Gustafson said. For example, approximately half of the participants were still using Elder Tree after 18 months even though the formal study period ended after 12 months. In addition, older adults who lived alone were the heaviest users of the program, as were individuals who felt that they did not have anyone in their lives who loved them.
He and his colleagues are now adding modules to Elder Tree that are intended to support caregiver needs and help caregivers with the challenges of providing care for loved ones. One module asks the caregiver to indicate how well the patient is doing, and that information becomes part of a clinical report that, when appropriate, will trigger a call to the clinical team. A separate randomized trial of caregivers of patients with lung cancer showed a significantly greater improvement in symptoms for individuals whose out-of-normal-range health status reports were reported to the clinical team. In fact, participants who used Elder Tree with this additional module lived 40 percent longer after diagnosis than those in the control group. That 40 percent increase was an average of 4 months of additional life, Gustafson said, which can mean the ability to attend a grandchild’s graduation or celebrate an anniversary.
Elder Tree has now been disseminated into 43 counties in Wisconsin. Gustafson said that the clinical trials and dissemination efforts show that Elder Tree appears to lighten the burden that clinical teams experience in providing care, which, he said, raises the question of whether there really is a need for more primary care physicians in the United States. While he said that he suspects the answer is that yes, more primary care physicians are indeed needed, he said that Elder Tree may shift care responsibilities to other members of the health care workforce.
In closing, Gustafson said that one of the key points of this effort is that by identifying the assets that older adults bring to the table, this type of technology can help them find meaning in life. “It strikes me that we may want to think differently about the workforce,” said Gustafson. Given the speed at which technology is advancing, he said, the workforce 10 years from now will likely need to respond to a different set of circumstances than are present today.
Accessible Transportation Technology Research Initiative
Federal Highway Administration, Department of Transportation
Mohammed Yousuf of the Department of Transportation (DOT) said that as a person with a disability, he has long found transportation to be a barrier, even with the availability of paratransit for most of the trips he makes. He noted that some surveys have found that 76 percent of people with disabilities say that adequate transportation options are important to their job search and that 29 percent consider transportation access to be a significant problem in accessing jobs. He said he sees the development of technologies that improve accessibility and mobility for all travelers as having the potential to have a very positive impact on the population of individuals with disabilities.
The DOT’s Accessible Transportation Technologies Research Initiative2 (ATTRI) came about in part as a result of the DOT’s work on connected and automated vehicles. “There was the sense that a lot could be done if the needs of those with disabilities were understood and,” said Yousuf, “technology could be married to those user’s needs.” Yousuf and his colleagues soon broadened their thinking to include the challenge of using advanced transportation technologies to help wounded warriors and older adults, two groups of individuals who also find transportation to be a barrier.
The ATTRI group decided to work on solutions for three target populations: people with disabilities, veterans with disabilities, and older adults. They focused on four types of functional disabilities: vision, mobility, hearing, and cognitive. Early on the ATTRI group realized that not all solutions will meet the needs of all individuals with disabilities. “The solution to tackle one disability compared to another is different,” Yousuf said. “You could have a solution for vision disabilities, but how can you design a system that [also] works with cognitive and learning types of disabilities?”
To answer that question, the ATTRI team looked at how they could bring collective, synergistic approaches to the research that was already happening at the DOT in the areas of intelligent transportation, wireless technologies, and sensors while also exploring technological
2 For more information, see http://www.its.dot.gov/research_archives/attri/index.htm (accessed September 16, 2016).
TABLE 5-1 Highest-Ranked Transportation Barriers Identified by People with Disabilities, Veterans with Disabilities, and Older Adults in a Survey Conducted by the Department of Transportation
|Top three barriers||Lack of or inaccessible signage, maps, landmark identifiers, and announcements||Navigation difficulties (e.g., do not know transfer time or distance)||Inconsistent accessible pathways and infrastructure|
|Top three user needs||Amenity information (e.g., restroom and shelter)||Real-time transportation information||Safety, security, and emergency information|
|Top three challenges with technology||Training to use and awareness of new technology||Affordability||Performance quality (especially for long-distance travel and rural areas)|
SOURCE: Adapted from Yousuf, 2016.
innovations in other domains that could create solutions to accessible transportation. They started with a deliberate, bottom-up approach, Yousuf said. Over a 3-month period, more than 1,000 participants in three groups—older adults, individuals with disabilities, and veterans with disabilities—submitted comments and participated in webinars and workshops. This exercise identified the top barriers that these individuals face, their top needs, and their biggest challenges with technology (see Table 5-1). One barrier, for example, was that too many trips using paratransit were missed because the driver could not find the prospective passenger and vice versa. However, said Yousuf, this is the type of problem that should be easy to correct with wireless technology and connected vehicles.
The ATTRI team also examined the state of practice and research in the transportation field and conducted a search to identify technologies outside of transportation that could be useful for addressing the transportation needs of the three target populations. From these two activities, the team developed a list of five key technology areas:
- Wayfinding and navigation solutions, with a focus on the integration of map data and standardized infrastructure descriptions from various sources;
- Information technology systems and assistive technologies, with a focus on remote assistance for stakeholders and opportunities to inform and aid in traversing barriers and also providing location information to caregivers and family members;
- Automation and robotics, with a focus on shared neighborhood autonomous vehicles that are cost-effective and aid in traversing the distances between transit stops, homes, and places of employment;
- Data integration, with a focus on reducing complexity and identifying coordination in service matchmaking through open data and services; and
- Enhanced human services transportation, with a focus on supporting initiatives by ridesharing services to involve ATTRI stakeholders and develop accessible versions of these services.
The ATTRI team also issued a request for information to obtain new ideas for applications from researchers, industry, and academic institutions.
With these findings and focus areas in hand, the ATTRI team conducted a 2-day workshop so that the public could provide comments on what application areas the DOT should consider for accessible transportation. Based on that input and a vote by the participants in the workshop, four applications rose to the top of the list. These four applications, in order of the priority given to them by the workshop attendees, were
- Smart wayfinding and navigation systems for indoor and outdoor use, including wearable technologies and community navigators;
- Pre-trip concierge and technologies that would provide pre-trip and in-route traveler information and virtual caregiver help for pre-trip planning and on-route support;
- Shared use, automation, and robotics to enhance mobility, to provide the ability to plan and execute trips and associated services, and to produce transformative transportation alternatives; and
- Technologies to create safe intersection crossings and crossing assistance for all travelers, including those technologies that would provide a direct interface between pedestrians and traffic signals and vehicles, and guidance, notifications, and alerts for optimization.
The 2 days of stakeholder engagement also produced the recommendation that new technologies be built on common platforms that enable data exchange between different systems. Today, for example, communities such as Chicago and San Diego are working independently on their
own accessible transportation solutions, but ideally all of these efforts would share data and information with each other, Yousuf said.
The workshop participants also asked for the transportation field to develop universal design standards so that the look and feel of an application would be the same on their smartphones, at assistance kiosks, at transportation hubs, and, looking into the future, in buses and cars or even on displays installed at intersections in so-called smart cities. Stakeholders also expressed the desire for integrated payment systems accessible to individuals with any type of disability and the leveraging of existing technologies whenever possible.
One example of a promising technology is a robotic mapping system that uses a smartphone to scan the area surrounding the user within seconds and create a map for personal use or that could be posted to the cloud for public use. Yousuf said he believes that such a system would be particularly useful for individuals with visual or cognitive disabilities. Another technology ATTRI is developing in response to a workshop participant’s suggestion would allow the user to customize the interface by having an application similar to, for example, Apple’s Siri3 but that would have a voice that is familiar to the user, such as the voice of a family member. “This could act as a buddy or virtual caregiver throughout your trip,” said Yousuf.
He noted that the National Institute on Disability, Independent Living, and Rehabilitation Research is going to fund a project to develop assistive robots that could help travelers with disabilities find different accessible transportation solutions with the help of robotics and automation. He also mentioned work aimed at developing applications that interface with traffic lights to enable an individual with a disability to request that the traffic light provide additional time for crossing the street.
In closing, Yousuf explained that ATTRI’s goal is to take advantage of the smart city movement, the Internet of Things, advances in artificial intelligence, and technologies that are creating the connected citizen in order to develop a system that can learn a user’s needs and automatically connect to a menu of technologies that would enhance the mobility of that user and enable him or her to engage fully with the community. The technologies to make such a system will be developed, said Yousuf, but new policies and institutional interventions will be needed to make such a system a reality.
Director of Health
Center for Information Technology Research in the Interest of Society
University of California, Berkeley
Today, there are many technology solutions in development that could have applications for increasing participation of older adults and individuals with disabilities in their communities, but realizing the potential of these technologies to improve the lives of these two groups will require breaking down the silos in which individual technologies exist and developing solutions that cross technology boundaries, said David Lindeman of University of California, Berkeley.
A recent report from the President’s Council of Advisors on Science and Technology laid out the potential for technology to create what Lindeman calls a “connected aging–disability landscape” that empowers social connectivity, emotional health, cognitive ability, and physical ability (PCAST, 2016). In this landscape, a combination of personal sensors, medical devices connected to electronic health records, fall-prevention technologies, voice communication, smart medication-management systems, assistive technologies, the Internet of Things, mobile applications, big data and predictive analytics, and a host of other technologies will connect the individual to both formal and informal caregivers and to the community.
Technology is making it easier to bring the community to individuals. “We have a range of new communication strategies reaching people where they are,” said Lindeman. “This, to me, is the biggest change that we are seeing—not having people come to [health care providers], but using technology to go where people are.” Similarly, he added there are new platforms that connect people using mobile devices. One group of his colleagues, for example, is creating an agnostic open source platform for mobile devices that would work on either iOS or Android operating systems and connect to electronic health records from anywhere. A goal of this project is to connect the electronic health records of 5 academic medical centers into a database of 15 million de-identified records to feed actionable information back to both patients and providers based on patient-generated data.
Telehealth technologies are also providing new solutions to the challenges faced by older adults and individuals with disabilities and by the workforce that helps them. In the future, Lindeman said, he sees virtual reality and augmented reality technologies, combined with the different
types of sensors, greatly increasing the utility of telehealth for bringing the clinic to the individual. He also identified the variety of apps and social networking programs available through the National Alliance for Caregiving4 and Family Caregiver Alliance5 as being critical technologies, along with the several websites that provide marketplaces where families can find caregivers for their loved ones, get guidance on care planning, and create and join supportive online communities for themselves and for their loved ones.
In the future, Lindeman said, he predicts that there will be more rapid technological advances that will benefit individuals, their caregivers, and the workforce. For example, ingestible nano-sensors will be game changers for medication adherence, he predicted. One such sensor dissolves when ingested and provides real-time information about what drug a person has taken, when it was taken, and at what dose. He predicted that Google Glass could return to serve as a valuable training device for anyone who needs just-in-time instructional information or serve as a training platform using augmented reality.
Developers are now starting to link wearable technologies with machine learning and predictive analytics and to build smaller, cheaper robotic systems that will be useful for individuals. Lindeman said ridesharing companies, such as Lyft,6 are increasingly providing door-to-door transportation solutions that will empower older adults and individuals with disabilities to be more engaged in their communities. The challenge for any of these potential applications of technology, said Lindeman, is “How can we control the vast array of information coming to individuals and make sure that it is usable for not only the older adult or person with a disability, but [also for] the workforce in terms of helping them do their work better?”
Technology applications do not have to be highly complex or expensive to be beneficial, said Lindeman. “Some of the best solutions that we are seeing are coming [from international sources] in what we call frugal technology solutions,” he explained. As an example, he said that some very low-cost solutions for hearing loss are being developed in Thailand and are likely to revolutionize the hearing aid industry.
As an example of how to turn technological promise into reality, Lindeman described the work being done by the Center for Information Technology Research in the Interest of Society7 (CITRIS), a 15-year collaborative of more than 300 researchers from multiple disciplines at
four University of California campuses. The research teams include engineers and clinicians working with faculty from business, information, and informatics schools and departments. The researchers use data and analytics crossing all of the areas in which CITRIS is working. The CITRIS innovation ecosystem generates some $90 million in annual funding and has produced more than 30 start-up companies from its multi-site testbeds and incubator programs. In 2016, CITRIS created Navigating the Human Path, an ongoing program in which older adults and people with disabilities work with university students to co-design new technology solutions. CITRIS has also used its nanotechnology laboratory and its incubator to bring together teams that include researchers and entrepreneurs from both inside and outside of the four universities, and offers access to testbed facilities that include age-friendly communities, senior living, transportation systems, health and hospital systems, and dementia programs. CITRIS’s incubator, The Foundry, helps move solutions out of the lab and into the commercial world quickly and has become a major driver for the overall program. Lindeman estimated that The Foundry has enabled spinoff companies to raise more than $10 million, added more than $30 million to California’s economy, and produced more than a 125-fold multiplier on seed funds.
In sum, Lindeman said, to advance technologies quickly, CITRIS takes a co-design and interdisciplinary approach from day one. Rapid-cycle prototyping and implementation at a speed that is often not possible in the funding cycles of many federal grant programs, are also central to the CITRIS process, though Lindeman said that more innovative funding streams and testbeds are needed to further accelerate technology development. He noted that the National Institute on Aging’s new Collaborative Aging (in Place) Research Using Technology8 grant program will allow for the development of new testbeds in locations where a new technology can be tested and deployed. Closer collaboration with industry should also enable faster development and testing of promising technologies, he added.
Lindeman concluded his presentation by describing some challenges in technology development. The first challenge is to become involved with co-design that involves users because technology is a tool, not a solution in and of itself. Another challenge is to prepare content that fits into an adult learning paradigm that takes into account both digital and health literacy. The field must also produce evidence-based outcomes and estimates of returns on investment, develop public–private partnerships to accelerate the pace at which new products start producing ben-
8 For more information, see http://grants.nih.gov/grants/guide/rfa-files/RFA-AG-16-021.html (accessed September 21, 2016).
efits for their intended users, and take lessons from work done outside of the United States, where some of the best ideas are being generated, Lindeman said.
It will be crucial to break down technology silos, create interoperable applications, and address concerns about privacy, security, and system maintenance, and the field must confront issues of affordability and equity in technology adoption, Lindeman said. San Francisco, one of the most technology-friendly cities in the United States, has convened an aging-focused Tech Council to figure out how to get technology to 10,000 older adults and individuals with disabilities who do not have access to the Internet. He questioned how new technologies will fit into accountable care organizations and other systems designed to provide value-based care. It will also be important, said Lindeman, to think about how regulations and policies will affect technology adoption and availability.
In closing, Lindeman reminded the workshop participants of the remarkable advances that transformed the large mobile phone of the late 1990s into a computer masquerading as a watch in 2014 and noted that smartwatch technology today is where phone technology was in 2002. “There are a lot of wonderful things that we can do going forward,” he said. His top concern, however, is making sure these technologies are customizable so that they work for each user, be it an older adult, a person with disabilities, or a professional supporting these individuals. “If we don’t,” he said, “we are just going to have a series of pilot [programs].”
Margaret Campbell of Campbell & Associates began the discussion by asking the panelists for their ideas on what next steps could be taken to bring their technologies closer to implementation and ready to be scaled. Gustafson replied that for Elder Tree the next step will be to model it in a way so that it is in the best interest of the health care system to pay for it. The best way of doing that, he said, is to show that the program reduces costs. He and his collaborators are partnering with Ministry Health Care,9 part of Ascension Health, to determine whether sharing data from Elder Tree with the clinical team is effective in preventing the onset of expensive health care costs. “We want to develop a system that is going to make a difference in the lives of people,” said Gustafson, but “you have to pay for it in some way, and the way in which we think we have to pay for it is by linking it directly back to helping the health care providers.”
Yousuf said that public–private partnerships may be a promising solution for moving accessible transportation technologies into the public
realm. He noted that the DOT’s Smart Cities Challenge10 was recently awarded to Columbus, Ohio, and comes with some $150 million in funding from federal agencies and several nonprofit organizations. Yousuf said that approximately half of the 12 vision elements, or requirements for proposals, included many aspects of accessibility related to disability. Going forward, he said, he expects some of the user needs and program ideas identified by ATTRI to be incorporated into future Smart Cities Challenge competitions.
Lindeman said it is important to always be tracking the new innovations that are continually emerging from a variety of sources. His group, for example, is conducting an Aetna Foundation–funded national search of technologies for vulnerable populations. The challenge, he said, is to identify those technologies that will provide low-cost solutions and to then move quickly to develop and disseminate them on a larger scale through partnerships with major national and international organizations, including nongovernmental organizations, corporations, and government agencies that work in communities. He also said that the United States has an advantage in this area, due in part to an environment that encourages and fosters innovation and that generates and assesses new ideas and rapidly moves them into the marketplace.
Technology for Workforce Training
Terry Fulmer of The John A. Hartford Foundation asked Lindeman for his thoughts on how to create a curriculum for the future of workforce training when technology is changing so rapidly. Lindeman replied that there are a number of opportunities for using technology in curriculum development, including a remote training program that he is developing for social workers but that could also be used for geriatric nurse practitioners and geriatricians. A key point, he said, is the need to think about training care managers, certified nursing assistants, and other frontline members of the health care workforce who are working in individuals’ homes. “We have to be looking at strategies to train people there,” he said. Such programs have to be concise, user-friendly, as seamless as possible, and deliverable on demand, Lindeman said. Another consideration is developing online learning programs for health care workers who come from other parts of the health care system, such as maternal and child health, and who want advanced training to move into eldercare or the disability field. He said that that training programming already exists
and that the challenge is to use technology to spread the reach of that programming and make it affordable.
Increasing the Uptake of Technology
Gail Hunt asked Gustafson how to deal with the lack of technology in some homes, such as Wi-fi, the lack of interest some have in using technology, and who pays to bring in the technology. Gustafson said his team is addressing these potential barriers in a number of ways. First, they carefully consider who introduces the technology. His team has established an “elderly geek squad,” which is comprised of people over the age of 65, to present technology systems to consumers and deal with any problems that might arise in the community. “The more you can get older adults saying, ‘I have been there and I used this, it works for me,’ the better off you are,” Gustafson said. Gustafson acknowledged that there are people who may never be convinced to use Elder Tree or any other technology, but he reminded the audience that the people with the greatest need are the people who are using Elder Tree the most. Lindeman said that CITRIS takes an intergenerational approach, rather than just using older adults to introduce the technology and train the users. “When you get a grandchild or a son or daughter who can show you more than you have ever figured out, it is much better and it works,” he said.
Gustafson said Elder Tree uses a 15-inch Chromebook touchscreen because older adults typically do not like using a computer mouse, and the cost is about $300. For those who do not have Internet access in their homes, his program pays for it using grant money. Though he admits that this is a short-term solution, he said he believes it should be possible to find a way to have health care providers and insurance programs, such as Medicaid, absorb the cost if they can demonstrate that these technologies significantly reduce health care expenditures, producing a very high return on investment.
Lindeman commented that these services need to be viewed as a utility, and that there are federal programs to spread access to high-speed Internet. Rural areas continue to be a challenge, he said, but big companies such as Comcast, Google, and others are taking on the challenge of spreading high-speed Internet into underserved areas, both urban and rural.
Designing Metrics for Technology
Tracy Lustig asked the panelists for their ideas about how the National Quality Forum can develop quality measures for newer, rapidly changing areas in need of quality measurement, such as technology and telehealth,
when in just a few years both the technology and the measures may be outdated. Lindeman commented that this is a key point. “We cannot be looking at measures or metrics that fundamentally change as the technology change[s],” he said, adding that the best technology designers are looking at problem-based design issues that focus more on what the solution needs to be rather than on the exact technology because the technology is going to change. He suggested thinking about standard metrics that are already in place, such as hospital readmission rates, as well as metrics around satisfaction and the efficient use of technology. Gustafson agreed that metrics should look at outcomes rather than process because the processes based on a particular technology are going to change as the technology changes. His focus, therefore, would be on metrics that assess whether the technology is providing a solution to a problem and if it is making a difference in the lives of individual users.