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Technology and Health Disparities

Globally, more people own a mobile phone than own a toothbrush, noted Kimberlydawn Wisdom, senior vice president of community health and equity and chief wellness and diversity officer in the Henry Ford Health System, in her opening keynote address at the conference. Seventy-seven percent of U.S. seniors own a cell phone or smartphone. By 2020, a projected 200 billion smart devices will communicate through wireless technologies—the equivalent of 26 devices for every person on the planet (Cisco, 2015). Already, 42 percent of U.S. hospitals are using digital health

technology to treat patients, and technology use is growing “at an exponential pace,” said Wisdom.

EQUITY AT THE HENRY FORD HEALTH SYSTEM

The Henry Ford Health System, which was founded by Henry Ford in 1915 and has five hospitals in southeastern Michigan, has a major focus on the elimination of health and health care disparities, said Wisdom. Its vision statement is “transforming lives and communities through health and wellness—one person at a time,” and one of the seven pillars upholding that mission is community. The system has pursued its goal of health and health care equity through grant funding and system support, but support for the mission also has been personal. Wisdom recounted an episode when she wanted to publish a paper showing that African Americans were having poorer outcomes related to diabetes care than their Caucasian counterparts in the health plan. She received the full support of the system’s chief executive officer to do so. “I cannot underscore that enough, because having individuals like that who will say, ‘Do the thing that is right, even though it may not reflect perfectly favorably on the organization,’ shows that we are paying attention to these things,” Wisdom said.

She also described an initiative from the 1990s in which the Detroit Piston’s basketball player Joe Dumars participated in what was called the African American Initiative for Male Health Improvement. “As we talk about eliminating disparities, you need to somehow find the route that is going to be most culturally appropriate to get the change that you need,” Wisdom explained.

The Institute of Medicine report Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (IOM, 2002) provided tremendous momentum by demonstrating “that the work we were doing was absolutely important and that those disparities were profound and persistent,” said Wisdom. The National Healthcare Disparities Report 2012 (AHRQ, 2013) likewise drew attention to what Wisdom was seeing in the clinic: vast differences in care and in outcomes for people of color versus the white population.

When Wisdom returned to the Henry Ford Health System after serving as surgeon general for the State of Michigan, she inserted into her terms for returning that health disparities be integrated into the results presented to the board. That led to the launch in 2009 of a health care equity campaign with the goal of increasing “knowledge, awareness, and opportunities to ensure that health care equity is understood and practiced by Henry Ford providers and other staff, the research community, and the community at large.”¹

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¹ More information about the campaign is available at http://www.henryford.com/healthcare equitycampaign (accessed May 18, 2016).

THE POTENTIAL OF TECHNOLOGY

The Henry Ford Health System has been working directly with communities to eliminate the causes of disparities. For example, it launched a LiveWell Center of Excellence, which involved the development of a strategic plan, the launch of a new website (HenryFordLiveWell.com), and the convening of a childhood obesity prevention initiative. It also has worked with thousands of young people in the community to drive environmental and behavioral change.

Technology has played a greater and greater role in these efforts, Wisdom observed. For example, young people use technology extensively, so the task with them has been to use technology as a tool to advance the system’s message—including working with a local rapper to develop a health-promoting song that was posted on YouTube.

The Henry Ford Health System also has been using a variety of technologies to communicate with and monitor patients remotely to improve health outcomes. Electronic medicine-dispensing systems can reduce the risk of medication mismanagement. Telehealth systems can help patients with chronic disease manage their own care and help prevent visits to emergency rooms and hospitalizations.

With the Partnership for a Healthier America led by First Lady Michelle Obama, the system has joined in the Healthy Hospital Food Commitment, which includes a third-party vendor that audits compliance.² The commitment includes a smartphone app that builds menus, provides complete nutrition information, offers other healthy living tools, and supports the 5-2-1-0 message (targeted at children), which stands for consumption of 5 or more fruits and vegetables per day, 2 hours or less of recreational screen time, 1 hour of physical activity, and 0 sugar-sweetened beverages. “We know that many disparities exist around diabetes related to weight,” said Wisdom, adding “We are trying to find ways to use technology to engage young people and their families.”

The Henry Ford Health System also has been working with three other major health systems in the area to address the infant mortality challenge. As Wisdom noted, in the city of Detroit, an average of about 200 babies die per year. “It is astounding that you could be here with these four mega-health-systems, [and] with the NIH perinatal branch right here, and yet we see these appallingly high infant mortality rates,” she said. In a collaborative effort, the four health systems have come together as leaders, funders, strategists, communicators, and implementers to address these and other disparities.

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² The third-party audit is conducted by the Altarum Institute, Center for Active Design, Food & Nutrition Policy Consultants LLC, RTI International, and the Rudd Center for Food Policy and Obesity.

As part of its effort to eliminate infant mortality, the system has received a grant from the W.K. Kellogg Foundation to use social media to inspire change through the Women-Inspired Neighborhood (WIN) network. A recently launched website (www.WINnetworkDetroit.org) seeks to empower not just low-income pregnant women but women of reproductive age, mothers, and caregivers—“the grandmothers and the aunts and the sisters,” said Wisdom. The network is active on Facebook, Instagram, Twitter, and blogs. “If we are going to address disparities, we are going to have to reach people in the model and medium in which they are most comfortable.”

In three neighborhoods with high infant mortality where the network is active, more than 200 women have delivered without an infant death. “[We have] driven the infant mortality rate to zero. We are really pleased with that,” Wisdom explained.³

One interesting observation has been that a major contributor to infant mortality is social isolation. “You would think, with all this technology, how could people experience social isolation? But there is a tremendous amount of people feeling disconnected,” she said. In response, the network has been developing ways to hold virtual sessions with women to teach and reassure them even when it is difficult for them to travel.

THE PERILS OF TECHNOLOGY

Technology is a “tremendous tool,” said Wisdom, but it also has potential perils. As an example, Wisdom cited the recent effort to collect data about race, ethnicity, and primary language at a detailed level. To develop a common platform, the system borrowed a tool developed by the Robert Wood Johnson Foundation called We Ask Because We Care. However, collecting race, ethnicity, and primary language data “is a heavy lift at the point of service,” which led to resistance from the frontline staff, she explained.

The use of the electronic health record (EHR) to reduce disparities is another example of potential difficulties. “Many individuals, whether it is meaningful use or in other arenas, have access to the technology, but using it in a way that can truly improve outcomes and close the health disparities gap is a major issue,” said Wisdom. With EHRs, providers can have their “faces glued to a screen,” giving them less time to interact personally with patients, adding that “it is great to have this technology, but if it limits that face-to-face time, if it limits the ability to really understand and communicate well to patients, it could have an unintended consequence.”

In addition, the Henry Ford Health System uses a tool known as MyChart to give patients access to their medical record. But surveys have

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³ The previous infant mortality rate was 15 deaths per 1,000 births.

shown that only about 12 percent of adults in the system have proficient health literacy—defined as a patient’s ability to obtain, understand, and act on health information—which has consequences in terms of patient use of health information. (Health literacy is discussed in more detail in the next chapter.) Wisdom noted, “One of the things that worries me is that, as we try to close the digital divide, unintended consequences of widening the divide in terms of outcomes could be an issue.”

Additional challenges include

• evaluating tools like MyChart to ensure that different racial/ethnic population subgroups are using it at the same rate,
• the potential loss of personal interactions as technology becomes more prominent in health care, and
• making the data accessible in communities.

Real-time data are important to eliminate disparities, because much of the public health data related to disparities are dated, said Wisdom, adding, “We need to be able to understand, in real time, what the data show, as well as communicate that to the community, so they can become partners in helping us eliminate health and health care disparities.”

ENGAGING COMMUNITIES

As was discussed throughout the workshop, community engagement has been a key component of the Henry Ford Health System’s efforts. For example, the system has used community-based participatory research to bring audiences to the table, where their voices can be heard while initiatives are being planned. Focus groups are another way to involve communities, although Wisdom said that communities need to be involved in meetings in an ongoing way.

Many of the community health workers are from the neighborhoods they (the community health workers) are serving. The women with whom they work see them as best friends. “They are my aunt. They are my confidante. . . . For the medical community, we want the data. We want all the hard stuff. [But] those relationships are key. They share information that they ordinarily would not share with their provider,” Wisdom explained.

Community health workers are directly involved in the research and outreach being done by the system. They have been included in abstracts presented at national meetings. One community health worker spoke at the American Public Health Association meeting and “had the room in tears,” according to Wisdom, adding, “She did a much better job than I did in terms of engaging the audience.”

People who are not traditional health care professionals also need to be empowered, she said. For example, when students learn about healthy eating, they can be ambassadors to their peers. “In many ways, they are our secret weapon, because . . . other students in their class will listen a lot better to them, particularly when they are in the lunch line, than they will to somebody coming in with a white coat saying you ought to do this,” she said. The system also has been examining technology that can help people learn through games, and it is very interested in mobile applications that are patient centered and easily accessible, even for patients who are not highly health literate.

A researcher at the Henry Ford Health System recently received a Patient-Centered Outcomes Research Institute grant to pursue patient engagement and patient-driven research in an effort to increase dissemination and implementation. The objectives are to understand the choices patients face, to align research questions and methods with patient needs, and to provide patients and clinicians with information for better processes and decisions. “We are going to learn a lot in that process,” said Wisdom.

The Henry Ford Health System is collaborating with more than 40 leading nonprofit health care organizations to create a menu of proven community health practices that work “from the top of the mission statement to the bottom line,” Wisdom observed. The objective is to show that there is an economic case around eliminating health and health care disparities. Another objective is to make technology the servant and not the master of the vision, in part by developing specifications and a framework for the development and acquisition of information technology that forms a single integrated system for clinical and community settings.

THE DIVERSITY OF HOPE

The world will look much different in 5 years as technologies develop and as policies and laws such as the Affordable Care Act continue to be implemented, Wisdom said. Health care will be much more patient and community centered, with health care professionals supporting the efforts of individuals. “It is going to become very exciting,” she noted.

Individual habits also can change. For example, Wisdom pointed to the spreading idea that sitting is the new smoking, adding that “I envision a future where at meetings like this people will be standing and walking even 2 miles an hour on some kind of device. . . . If you have gone to your meetings for the day, you will have gotten your 10,000 or 20,000 steps in because you have been in meetings all day.” At Henry Ford Health System, for example, some meetings are done while walking around the building.

Winston closed by showing a mural that is composed of many hundreds of individual drawings submitted by people in the community. Each small tile in the mural represents the artwork of someone who was asked to envision the future, and contributors can zoom in to their drawings on a special website. The mural⁴ is being put on buildings in three neighborhoods in Detroit “as a way to show that we are there and you have a voice and we want together to bring hope to the community,” she concluded.

REALIZING THE PROMISE OF MOBILE TECHNOLOGIES

For much of the history of the computer age, computers have been tied to plugs, whether for power or for Internet access, which meant that some people could access and use computers while others could not, observed Wendy Nilsen, health scientist administrator at the Office of Behavioral and Social Sciences Research and program director for the Smart and Connected Health program at the National Science Foundation (NSF), in the second keynote address of the workshop. But now the world has gone mobile, and “Mobile is where we can finally reduce the digital divide,” she began.

At the National Institutes of Health, mHealth refers to any wireless device carried by or on a person that accepts or transmits health data and information. Such devices include sensors, such as implantable miniature sensors and nanosensors, monitors such as wireless accelerometers and blood pressure and glucose monitors, and mobile phones and tablets.

Mobile technologies “can expand the things we care about in health to the real world instead of having it stay only in rarified academic centers,”

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⁴ An image of the mural is available in the speaker presentation by Kimberlydawn Wisdom, posted on the Roundtable website at: http://www.nationalacademies.org/hmd/Activities/SelectPops/HealthDisparities/2014-OCT-02.aspx (accessed May 18, 2016) and on the Project S.N.A.P. webpage: http://projectsnap.org/mural/winnetworkdetroit (accessed May 18, 2016).

said Nilsen. These technologies can generate user-friendly tools for enhancing health. They can change the questions people ask about their own health and about the information available to them. These technologies can scale up to entire populations, and they can facilitate more efficient and representative clinical trials. Nilsen discussed each of these topics in turn.

MOBILE TECHNOLOGIES AND HEALTH DISPARITIES

mHealth technologies can help reduce disparities in a variety of ways, Nilsen observed. First, they are used very widely. African Americans lead whites in their use of mobile phones, with Latinos only a few percentage points behind, and African Americans and Latinos lead whites in their use of mobile data applications. Those with less education and lower incomes use cell phones almost as much as others. Not everyone has access to mobile technologies all the time. Some people might lose coverage for a while, but they tend to get it back, Nilsen acknowledged.

According to national surveys, about two-thirds of cell phone owners find themselves checking their phone for messages, alerts, or calls even when they do not notice the phone vibrating or ringing. Nilsen cited a recent newspaper article saying that many people begin to panic when they cannot check their cell phone for 4 hours or more. “If you walk out the door this morning without your laptop, without your ID badge, you are going to keep going. You are going to figure out a way around it. If you walked out the door without your phone, are you going back?” she wondered.

Young adults are leading the way in the use of mobile data applications. They also are pioneering new ways of using mobile technologies—for example, by taking pictures of visible health problems and sending them to their health care providers. Older Americans still lag in their use of cell phones but increasing numbers are discovering the value of these technologies.

One great advantage of mobile technologies is the degree to which they can be customized by languages, applications, ringtones, and other features, including how they are decorated. These technologies are “intimate in a way that we have never had technology intimate before,” said Nilsen.

Mobile technologies can centralize communication. They can be a health hub, transferring photos, to-do or to-ask lists, and messages among patients and a care team. They can provide patients with interventions and information programs alongside self-tracked information. Patients can ask questions when those questions occur to them, not in a rushed clinical encounter. Mobile technologies also could allow patients to respond to short and brief questionnaires rather than long forms. “Why can’t we

think the way industry has been thinking—getting a lot of information, constantly updated, but in the same way doing it simply?” Nilsen asked.

Finally, mobile technologies can greatly increase the representativeness of clinical research. Patient-generated data can be combined with clinical information, assessment data, and treatment plans to make what Nilsen called a “fabulous health stew.” Technology could gather the information that is routinely gathered in doctors’ offices, such as weight and blood pressure information, and it can collect such information in an ongoing way and not at one point. Very few patients ever go to academic medical centers, which tend to see only the most complex and hardest cases, yet this is where most research is carried out. Technologies could make it possible to do such research remotely, she said, adding, “We can have high touch when we need, but can we have tech touch the rest of the time, so people do not have to come to an academic center?”

USING MOBILE TECHNOLOGIES TO CHANGE BEHAVIOR

Mobile technologies are clearly changing behavior, said Nilsen, though not always for the better. “Think about what Madison Avenue is doing. They are using YouTube. They are using Twitter. They are using apps. They are using all of this to change behavior. Let us change it back. Let us get it the way we need it,” she commented.

Mobile technologies provide opportunities for engagement that rival unhealthy competition, Nilsen said. Mobile technologies provide the potential to make healthy behaviors enjoyable and desirable. They can get people moving and eating better. They provide real-time information when and where people need it, and they are integrated into people’s lives. “Think of how we can capture all that glitzy world that we never could touch in health,” she said. For example, smartphones could tell when someone is at a fast food restaurant and suggest healthy options. Another example Nilsen mentioned is the iPeriod app, which allows women to track their menstrual cycles, adding “Why aren’t we thinking about how you partner with iPeriod to make sure not only are you tracking your period, so you are not getting pregnant, but what are you doing about your diabetes, too?”

Sensors that collect information across populations and over time also can change behaviors. For example, body sensors being used by overweight young Latinas are being embraced by those who use them, she explained, adding, “These girls love to show off their sensors. . . . The moms said, ‘We want to do it, too.’” Text messages can be designed for people to manage chronic diseases. Health care providers can intervene remotely with greater frequency than for traditional care, with real-time management and a reduction in acute care. People can use their technologies to have private or difficult questions answered, enabling a proactive, timely,

person-centered approach to health care. Wireless sensors can connect with the electronic health record, providing information for predictive health assessment frameworks.

To reduce disparities, people need actionable data, said Nilsen, explaining, “It has to be good for something. It cannot just cause a liability. It has to be able to provide information to everybody that works.” Communities also need to be integral to the planning effort, said Nilsen. “What I think would work does not matter. I am not the one it is going to target,” she said. Only by spending lots of time talking with people, from high users to nonusers, is it possible to figure out what will work. “When they use their device, what kind of things would work for them? How would it work for them? That is when it is successful,” she said.

One way to teach people about these approaches is to involve young people, who may not be formally trained but are intuitively good at using devices. In Nilsen’s work, young people have become very involved. “I work at NSF, and one of the things that we find is [young people] are very interested in this area, even in high school, looking at how do you build an app, how do you build a program, how do you think about that,” she said.

The missing link, said Nielsen in response to a question, is user-centered design—creating technologies, programs, and information that people want to use. Industry has much to teach health care about this issue, as do the users of technologies and communities as a whole. Technologies such as YouTube have been successful in capturing huge audiences. If such technologies could be directed to reducing health disparities, great progress could be made. People are using technology to change behavior, Nilsen concluded, adding, “You can too.”