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Health Literacy and Consumer-Facing Technology: Workshop Summary (2015)

Chapter: 5 Health Information Technology and Selected Populations

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Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
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5

Health Information Technology and Selected Populations

The workshop’s third and final panel featured three presentations on how thoughtfully designed consumer-facing technologies can be used to reach and improve the health of selected populations. Katherine Kim, assistant professor at the Betty Irene Moore School of Nursing at the University of California, Davis, spoke about the use of consumer-facing technologies with Native American populations. Elizabeth Jordan, associate professor and senior assistant dean of undergraduate nursing at the University of South Florida’s College of Nursing, described how mobile technologies can provide critical information that can help pregnant women and new mothers improve their health and the health of their babies. Winston Wong, medical director at Kaiser Permanente discussed the promises and perils of technology that were brought up in an IOM workshop on digital health strategies, health disparities, and health equity conducted by the Roundtable on the Promotion of Health Equity and the Elimination of Health Disparities. An open discussion moderated by Pamela Jeffries followed the presentations.

ISSUES AND USE IN NATIVE AMERICAN POPULATIONS1

The message that Katherine Kim said she wanted the workshop participants to take home is that there are types and there are stereotypes. “We

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1 This section is based on the presentation by Katherine Kim, assistant professor at the Betty Irene Moore School of Nursing at the University of California, Davis, and the statements are not endorsed or verified by the IOM.

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

tend to build technology to the stereotypes,” she said, and she illustrated this point by referring to herself. “What you probably see in front of you is a middle-aged Asian woman, fairly well educated because you just heard my biography, and I have some technology experience. What you do not know about me that I just learned about myself is that I am 3.4 percent Neanderthal, and when I learned that, it had a huge impact on my perception of my health. I somehow felt more vigorous, more robust, like I could take on anything, which is important because I had gestational diabetes with my second child and have been told that I am at increased risk for developing diabetes, so I should lose some weight.”

“The other thing that you should know about me,” Kim continued, “is that there is one thing that I do related to my health very actively and very regularly every single day whether I am at home or whether I am traveling, and that is brush my teeth. That is the one point at which you always know I am going to do something about my health.” Given that information, she challenged the participants to build an app for her that would help her lose weight. “Had you built from my stereotype, you would have said, ‘She does not care so much about weight, is not that concerned about diabetes because Koreans are not in the group of Asians that are prone to diabetes, and probably uses lots of health apps because she is in this field;’ but I have no health apps on my phone. You would have built something for someone like me assuming something. Knowing something about me though, you might now build something different.”

Turning to the subject of addressing structural health disparities and the digital divide facing Native American populations, Kim explained that there are 3.7 million American Indian and Alaskan Native people in the United States. The Indian Health Service is the primary care provider for 2.2 million of these individuals, most of whom live on reservations. Life expectancy is 4.2 years less than for the rest of the American population and all-cause mortality is 1.2 times higher. Not only are there significant health disparities affecting this population, but there is also a great digital divide. Kim noted that most people want to get health information from the Internet in someplace private, and for most Americans that means having home Internet access. “We know that 96 percent of the richest people in the United States have home Internet and only 25 percent of the poorest,” said Kim. Only 30 percent of Native Americans have access to in-home broadband service, which she said is critical for accessing most health information technologies, compared to 69 percent for Asian Americans, who have the highest level of broadband adoption. “When you have broadband, you do different things. You can use sites that have rich and dynamic content. You can look at news. You can search for jobs and submit applications for jobs. You can look at blogs and post blogs, and you can publish your own information,” explained Kim. The digital

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

divide extends to schools as well. In schools in which minorities make up the majority of students, there are 37 percent more users per Internet-connected computer.

In this context, said Kim, efforts to address the digital divide among Native Americans has focused on providing access to broadband service in tribal centers and public libraries. She specifically mentioned efforts by The Bill & Melinda Gates Foundation that brought broadband connectivity, hardware, software, training, and education to Native American communities. The federal government’s Broadband Technology Opportunity Program is also providing funds to rural communities in general and Native American communities in particular, though this program does not address the “last mile issue,” which is getting broadband into the home. Kim called this a critical infrastructure gap. Nonetheless, public and tribal libraries are now providing critical access to health information to Native Americans, and she noted that NLM has a Native American outreach program to create targeted health-related content and to support developing the infrastructure to tribal communities.

Once infrastructure is in place, it is then possible to think about how to use that infrastructure to improve the health of these underserved communities, but as Kim noted, little research has been done on the best way to do so for Native American communities. She referred to a systematic review of the literature on technology and health disparities conducted in 2012 (Montague and Perchonok, 2012) that found only four papers that even mentioned Native Americans. In an update of this review, Kim and her colleagues found two more papers. “There may be things going on in these communities, but they are not in academic publications,” said Kim. The published work has focused primarily on online education because the access to K-12 education for tribal communities is still quite limited, she explained.

The Indian Health Service’s telemedicine efforts, rather than focusing on consumer-facing technology, have centered mostly on clinic-facing technology that provides access to specialty consults. These efforts have produced good results in terms of wait times for specialty consults and access to specialists that were not available at all prior to telemedicine, Kim explained. She also highlighted the MyPreventiveCare program, which Alex Krist discussed earlier in the workshop, and the Mobile Health for Youth effort. The former provides an interactive preventive health record at practice-based research networks, two of which serve a significant number of Native Americans. The latter focuses on sexually transmitted diseases and teen pregnancy. She said more work is needed in Native American communities and that a couple of the programs discussed at the workshop presented opportunities to do just that using culturally grounded evidence and technology enablement.

To illustrate those opportunities, Kim discussed her own work. With

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

regard to culturally grounded evidence, she took words that represented traditional Native American values (Coyhis and Simonelli, 2008), many of which most investigators would not use in describing their health information technology research, such as patience, balance, humility, spiritual, respect, sovereignty, restitution, autonomy, calmness, and plurality (see Figure 5-1). “It is important that these traditional values actually come throughout the entire continuum of research and development in order for us to really engage the Native American community in improving community health,” said Kim. She noted that the National Congress of American Indians (NCAI) developed a research agenda in 2007 that includes addiction and diabetes as two of the health issues in which NCAI was interested. NCAI also developed a tribal research curriculum that was intended to help tribal members engage successfully in research.

In her project, which is funded by the U.S. Department of Agriculture, Kim and her colleagues are working with three tribes in Northern California and Southern Oregon: the Karuk, the Yurok, and the Klamath tribes. The project’s goal is to engage tribal youth with mobile technology so that they become the drivers of community health, and one of the tools Kim’s team used is a research and leadership development curriculum that engages youth to become community researchers. After several weeks of training, tribal youth were able to design a research project and use mobile technology to conduct the research. Kim noted that four members of the youth research team presented the first results of this project to a packed room of physicians, nurses, researchers, and community members at the University of California, Davis, Clinical Translational Sciences Center. The

image

FIGURE 5-1 Words that represent traditional Native American values are a piece of culturally grounded evidence.

SOURCE: Kim presentation, March 24, 2015.

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

youth researchers gave her permission to discuss the project results at this workshop and have approved the content of this presentation.

The youth researchers first considered four different methodologies that they felt were culturally appropriate because they involved storytelling: survey, interview, graffiti wall, and photo voice. They decided to conduct a community food and health assessment and selected two methodologies, a verbally conducted survey and photos. There is little Internet and cell phone connectivity in this region so they used Magpi software to develop the survey instrument that could be used on their iPods in disconnected mode and then the survey data uploaded back at the tribal computer center. The survey reached 212 tribal members. One of the compelling results focused on confidence around health food choices and its relationship to physical activity. The results showed that the two were strongly related and so the youth researchers decided to do something around physical activity because that had an impact on confidence about food.

Kim and her colleagues suggested that the youth researchers make a game out of their intervention, but the youth researchers said that collaboration, not competition, is a core tribal value. They also said it was important to engage tribal elders and the wisdom they possess, so they came up with a game called walk-about. The game is a mapped walk that takes participants through the community and the countryside, enabling them to look at native plants, to understand their significance to the tribe, how to prepare them for eating or for use as medicine, and where to gather them. “But this is where community engagement is really important because the data you collect when you have a game like this are GPS location, and some of the walks were going to go to sacred and culturally important tribal sites, which should be protected, not shared indiscriminately outside of the tribe,” said Kim. In one story relayed to her in explaining this, a location for harvesting mushrooms was made public and outsiders stripped all the mushrooms and sold them at a farmers’ market. This was against the local culture in which community members have respect for the Earth’s resources and would take only what they could use or share with others in need. “These are the kinds of things that the tribes are concerned about in terms of sovereignty and protection of resources,” said Kim. She also noted that because the nearest small grocery store is 15 miles away and the closest large supermarket is 38 miles away, access to historically important tribal foods that are natural and wild in the environment is critical to the tribe.

The last point Kim made is that technology that is enabled and designed with community engagement takes a similar approach to the design of patient-centered technologies. “User centered is really from the external perspective,” she said. “I, as a technology developer, think about what you, as a user, need in order to use my product. I, as a provider or health system

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

administrator, think about what you, as the patient, need to engage in the health care system.” Empowerment, she explained, is an internal perspective: “What do I, as the user, need from the system in order for me to do the best I can to improve my health or to improve my experience?”

The use of participatory research and participatory design, said Kim, takes that internal perspective and combines with the cultural context of the community to produce the best technology and the best health intervention design. That, she said, is what she meant at the beginning of her presentation when she talked about not turning types into stereotypes, which would produce a one-size-fits-all technology. “We can actually use social and mobile technologies to design experiences that fulfill individual user’s needs, preferences, and values,” she said in closing.

MOBILE TECHNOLOGIES FOR PREGNANT WOMEN AND NEW MOTHERS2

Elizabeth Jordan discussed some of the lessons learned from the national text4baby program as an exemplar for communicating with pregnant women and new mothers. She noted that she came to work with text4baby through her work with the National Healthy Mothers, Healthy Babies Coalition. The coalition wanted a nursing perspective at the table when it began to launch the text4baby program in 2010.

There are many good reasons to develop a text-based mobile app to reach pregnant women. First, 89 percent of young women have cell phones. Some 99 percent of text messages are read, 90 percent within 3 minutes. People of color are more likely to text than their white counterparts, and low-income Americans text more than higher-income adults. Although text4baby has developed a mobile app, it began as a program to send short text messages to pregnant mothers. Jordan said the evidence she would discuss comes from the text messaging aspect of the program.

Using text messaging to change health-related behaviors is not new. A 2010 meta-analysis and systematic review of text message–based interventions found evidence to support text messaging as a tool for improving behavioral and clinical outcomes for weight loss, smoking cessation, and diabetes management (Cole-Lewis and Kershaw, 2010). Other studies have shown in randomized controlled trials that text messaging can improve influenza vaccination rates among low-income, urban children, adolescents, and pregnant women (Hofstetter et al., 2015; Stockwell et al., 2015), though another randomized controlled trial found that text message prompts were

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2 This section is based on the presentation by Elizabeth Jordan, associate professor and senior assistant dean of undergraduate nursing at the University of South Florida College of Nursing, and the statements are not endorsed or verified by the IOM.

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

not effective at increasing vaccination rates among low-income, urban pregnant women (Moniz et al., 2013). Jordan noted that the Journal of Health Communications published a series of articles on the effectiveness of mobile health technologies to change health-related behavior, including two on text4baby (Evans et al., 2012; Parker et al., 2012).

The text4baby program is a free service provided by the nonprofit National Healthy Mothers, Healthy Babies Coalition. It is the largest mobile health initiative. As of March 14, 2015, Jordan said, 800,122 English-speaking women and 46,372 Spanish-speaking women had enrolled. Johnson & Johnson provided the initial funding, but the program now has more than 1,100 sponsors promoting it, including the White House Office of Science and Technology Policy and HHS. The program focuses on delivering messages to pregnant women and mothers with children under age 1 on a range of key topics, including smoking cessation, breastfeeding, health care access, diabetes, nutrition, oral health, immunization, prenatal care, disabilities, family planning, HIV/AIDS prevention, violence prevention, physical activity, safety and injury prevention, mental health, substance abuse prevention, developmental milestones, labor and delivery, car seat safety, safe sleep, and exercise. The goal is to support mothers in achieving key developmental milestones, thus giving their babies the best possible start in life.

Women learn about the program through word of mouth, at a health care provider’s office, in a clinic, and even from community workers who help pregnant women and new mothers enroll in text4baby. Signing up for the program is as simple as texting BABY or BEBE to 511411. The mother-to-be or new mother inputs her due date and zip code, then the system sends free tips approximately three times a week throughout pregnancy and until the baby’s first birthday. Through text4baby, women can also learn more about certain topics, get support for enrolling in Medicaid or the Children’s Health Insurance Program (CHIP), take quizzes, get urgent health alerts, sign up for appointments, receive notifications of the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) meetings and vaccination reminders, provide feedback on specific messages, and get connected to support hotlines. Jordan said that developing evidence-based content that reflected the latest research on readability and reading level was critical in launching the program. This development was done in close collaboration with CDC and was guided by the mobile health conceptual model of behavior change developed by Douglas Evans (Evans et al., 2012). All content received a rigorous review by a content development council that had representatives from the American Academy of Pediatrics; American College of Nurse-Midwives; American College of Obstetricians and Gynecologists; Association of Women’s Health, Obstetric and Neonatal Nurses; CDC; HRSA; March of Dimes; National Associa-

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

tion of Pediatric Nurse Practitioners; and the Society for Maternal-Fetal Medicine.

Interactivity is a key feature of the text4baby program. Of the 267 messages that the program sends out, 58 percent contain additional health and resource information, 46 percent contain links to the text4baby mobile webpages developed in partnership with major medical associations, and 25 percent provide a phone number for resources such as local food banks and domestic violence hotlines. There are also 45 links to informational videos and 15 visit and appointment reminders. Nine messages prompt mothers to text back “LIKE” when they find a message helpful, and seven messages encourage mothers to text back “MORE” to get additional information. Quizzes on food safety and pregnancy as well as car seat safety in infancy are also included.

For women with at least a high school education, text4baby showed a positive effect with regard to knowledge that alcohol use will harm a baby and about the value of prenatal vitamins. Nearly two-thirds of new mothers reported that text4baby helped them remember a vaccination appointment, and 74 percent of users reported learning about a medical warning sign, both during their pregnancies and in the newborns. Two-thirds of the users reported talking to a provider about a topic from a text4baby message.

Text4baby, said Jordan, is a data-driven initiative, and staff routinely monitor and analyze a wide array of data collected through the mobile platform and other sources. Aggregate data are available on the text4baby website, and specific data can be accessed upon completion of a data agreement usage form. Available data include enrollment and cancellation data, survey data, and interactive module use. Some anecdotal data obtained from participant feedback phone calls, discussion groups, and social media sites are also available.

As an example of how text4baby works, Jordan discussed the influenza module, which was developed in 2012. “The idea was that we wanted to know if we could improve the rates of flu vaccinations by using messages for pregnant women and moms with infants,” she explained, and to overcome various barriers, such as forgetting or getting too busy, the cost of vaccination, and health concerns related to the safety and efficacy of influenza vaccination. On October 15, 2012, all current enrollees, some 89,000 women, were sent the message “Flu season is here and we’re checking in with moms. Are you planning to get a flu shot this year?” and 28,609 women responded. Those who responded were asked if they would like a general reminder or something more specific. For those who were not planning on getting a flu shot, the program asked the user why not. A follow-up message was sent on November 27, 2012, asking if the user had gotten a flu shot. For women who identified cost as a barrier, the text4baby program provided a local source for free vaccinations, and these women were two times more likely

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

to get vaccinated. What that shows, said Jordan, is that mobile health apps can overcome barriers and connect women with the care they need.

Jordan also said that text4baby partnered with the Connecting Kids to Coverage initiative of the Centers for Medicare & Medicaid Services to drive enrollment in CHIP, Medicaid, and text4baby. Three days after enrolling in text4baby, the Medicaid module sends a message asking the women about the type of insurance they have. Those who respond that they have no health insurance are sent information on Medicaid/CHIP, with a follow-up message sent 1 week later to see if the women had applied for insurance. Those who respond that they have Medicaid/CHIP or who indicate that they have applied for coverage receive information on how to renew their coverage through these programs, Jordan said.

LESSONS LEARNED FROM THE WORKSHOP ON DIGITAL HEALTH STRATEGIES, HEALTH DISPARITIES, AND HEALTH EQUITY3

The workshop’s final presentation, delivered by Winston Wong, discussed some of the lessons learned from an IOM Roundtable on Health Equity and the Elimination of Health Disparities meeting that was held in Detroit on October 2, 2014. He noted that the previous two presentations would have fit well in the context of that meeting. He also explained that the meeting was held in Detroit because it has some of the worst health disparities in the United States, particularly with regard to infant mortality.

The focus of that workshop was to explore how communities are using digital health technologies to improve health outcomes for vulnerable population groups and to investigate community engagement efforts to improve access to high-quality health information. The workshop also discussed the need for models of successful technology-based strategies to reduce health disparities. One key theme in the workshop was that digital health strategies have the potential to both exacerbate and diminish already existing disparities among population groups, a point that Wong said was also made at this workshop. Another theme was that addressing health disparities is not about technology, but rather is about people. “Technology is extremely seductive and we are bombarded daily about the promise of technology,” said Wong. “But technology should be the servant, not the master.” The importance of engaging the community in health behavior change and addressing disparities was another theme that emerged from

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3 This section is based on the presentation by Winston Wong, medical director for community benefit disparities improvement and quality initiatives at Kaiser Permanente, and the statements are not endorsed or verified by the IOM.

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

the Detroit workshop’s discussions, as was the need to look at systems and patterns rather than at individual, isolated events.

As was the case at this current workshop, the Detroit workshop made the point that there is already extensive use of mobile technologies in minority communities, particularly among the younger segments of the American population where smartphone use is nearly ubiquitous. As one Detroit workshop participant noted, more people globally own a cell phone than own a toothbrush, and Wong remarked how intriguing it is too see photos of people in the most isolated parts of Africa using their cell phones.

As Kim stressed, community engagement is critical, as is participatory research. Outreach efforts have to be ongoing, said Wong, and there is a need to think about ways to incentivize participation, not in terms of the stereotypes that Kim mentioned, but in terms of what is relevant to specific communities. In that respect, it is essential to align research questions with community and patient needs. The text4baby program, noted Wong, is an example of a program that involves local individuals in efforts to customize messages to reflect community and patient needs.

One speaker at the Detroit workshop said rather provocatively that mobile technology is where it is at, and to demonstrate that notion, the workshop featured lunchtime presentations by producers of different mobile health technologies. “We saw mobile health applications that had to do with connecting people to healthy foods, to WIC vouchers, and other things that were not just about engaging individuals with regard to health behaviors, but also connecting people to resources,” said Wong.

Mobile health technology, said Wong, can reduce the digital divide and mobile technology allows for customizing digital health technology. Mobile technology is also useful for centralizing communication and gathering information across people and systems. One mobile health application that was discussed at the earlier workshop could track menstrual cycles for “less risky sex,” though one could argue that it could be used to increase fertility, too.

The workshop also highlighted that there are perils associated with digital health technology. Time commitments can cause health care staff to push back against technology adoption, as can the fear that technology will replace personal interactions between providers and patients. Health literacy is also needed to use these tools, and today, little effort is made to evaluate both the usability and utility of these tools, as was also mentioned at this workshop. Toward that end, the Detroit workshop stressed the importance of the technology industry working with members of the health care field, as well as young people, on creating evidence-based apps and other technologies with user-centered designs. In addition, the Detroit workshop noted the lack of diversity in the technology world and questioned how industry would develop technologies for people of different

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

backgrounds and needs without involving individuals from those underrepresented communities in the design process. “This is a question of how do we democratize the development of health technology,” said Wong. Another industry-related concern had to do with the disconnect between the technologies that industry is developing with the profit motive in mind and actual needs as far as improved health outcomes.

Other concerns about digital health technology in general include issues of privacy, the volume of material that consumers may need to deal with, and the amount and complexity of that information. A critical question that remains to be answered, said Wong, is determining what works for whom and under what circumstances. One concern that Wong found interesting was about the need to make digital health technologies “hackable,” that is, they need to be customizable by the user. This point, he said, was raised by an office of ZeroDivide, a nonprofit organization based in San Francisco that studies ways of overcoming the digital divide among vulnerable populations. ZeroDivide sponsors hack-a-thons for different communities at which community members look at different technologies and alter them to make them more relevant to their needs.

Wong noted that the cost of connectivity is not declining, and access issues remain as serious as ever. “There are certainly issues about reaching people who need to be reached and not necessarily assuming that everybody has access to the Internet,” said Wong. He mentioned Kaiser Permanente’s HealthConnect system, which is available to every Kaiser member and can provide lab results, enable prescriptions to be refilled, and give users the ability to email their physicians. This system also has the ability to accept digital photos that can be sent to care team members. Wong said that HealthConnect has transformed Kaiser’s ability to connect with patients and how the organization thinks about health care delivery. “Indeed, 35 percent of all the interactions that any primary care physician has at Kaiser Permanente are now through email as opposed to face-to-face and telephone visits, which has led to quality improvement in the delivery of care,” he said. However, usage is not equitable across all groups and there are Kaiser members who have access, who do not have access but want it, and who do not have access and do not want it.

The moral of the story, said Wong in his concluding remarks, is that digital health technologies have the potential to both exacerbate and diminish already existing disparities among population groups. The main takeaway message, then, is that it is critical to engage the targeted populations in underserved communities. “If we don’t engage people in the communities that have historically been underserved, we are not really addressing the issues of health equity,” said Wong.

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

DISCUSSION

Pamela Jeffries started the discussion by asking what could be done to reduce the initial cost of technology, a factor that seems to contribute to health disparities. Kim replied, “Make it cheaper,” and she noted that it is not just the cost of the device, but of the data plan, training, and data storage that contribute to the overall cost of technology. One reason why her project used iPods as the base technology was because it does not rely on a data plan or cell phone plan, can be disconnected from the Internet and still used, which keeps the cost down. Her team used the Magpi software package, which was originally created for use by health workers in Africa, because it is free, further reducing the cost of the technology. “You can have the full functionality of a very robust survey interview tool, but it is free and you can customize it to what you need,” said Kim. The tribes are now using this software to customize their survey tool for a different purpose in the same project. “Whatever we can do to reduce the ongoing cost and maintenance cost for technologies for underserved communities, we need to explore those options,” she said. One advantage of using text messaging, said Jordan, is that it keeps the cost of technology down and can be used with inexpensive regular mobile phones.

Wong wondered if health plans will start looking at their portals to see if there should be a co-payment for access into the portal, just as there are now co-payments for pharmaceuticals. He also noted, though, that some people are arguing that it is a human right now to have access to information as a critical part of maintaining health.

Jeffries then asked the panelists to comment on the challenges of conducting research on these mobile strategies. Jordan said that although the randomized controlled trial has traditionally been considered the best way to conduct research that will produce the strongest science, it is often difficult with mobile technologies to fund these randomized controlled trials and to collect data in real time. “I do think that there is a need for rigorous evaluations that might be in lieu of the randomized controlled trial,” she said.

Kim addressed the question by first noting that it is not just health literacy that needs to be accounted for, but also community literacy on the part of the researcher. “We as researchers need to have cultural humility around what we don’t know and have some literacy about how to best engage a community if we want these interventions to work in the best way they can,” said Kim. Moreover, access to a device is not the only challenge that needs to be overcome. “Every one of these devices and every one of the applications running on those devices has issues with acceptance, usability, and usefulness for our participants,” Kim said, adding that without adop-

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

tion and acceptance, and without working out all of the feasibility issues, there is no sense in even thinking about a randomized controlled trial.

Junyang Wang of FDA asked the panel how they look at subpopulations and minorities when it comes to clinical trials, given that there are only so many subdivisions that can be made before a clinical trial loses its power. “What factors do you think are the really important ones to consider?” he asked. Wong replied that the community is a good level to get to, but having said that, he added that there is a political issue with regard to disaggregation of the racial and ethnic categories commonly used in the United States. He noted that the designations Asian and Pacific Islander, Latino, and African American have limited clinical significance because these groups are so heterogeneous. “I’m not a research scientist so I do not know where the p values start to get diluted, but I think we have to make the commitment to understand in the United States, which probably has the most unique population in the world. We cannot really uncover hidden disparities until we understand the science of disaggregation,” said Wong.

Wang then remarked that FDA is now posting demographic information on clinical trials in what is known as the Drug Trial Snapshot as part of the FDA Safety and Innovation Act requirements for including demographic subgroups in clinical trials. He then asked the panel if they had any ideas about how best to communicate that type of nuance to the public. “Will they look at these data in a way that will help them in their medical decisions?” he asked, and if so, does the benefit from using demographic subgroups in clinical trials outweigh the statistical challenge of getting answers from those trials. Kim responded that erring on the side of access to information is better than lack of access simply because of worries about whether people will understand the information. As an example, she cited her experience working with the Karuk tribe youth, who discovered through their participation in this research project just how much their community was concerned about the health of their residents. When these youth saw that issues like obesity were a concern, they were then able to look at national statistics and discover that this is also a national concern and then discuss how important this was to them and what they should do about it. “I think that having some context about what information is available that you can actually use to think about technology and think about health interventions in your community is beneficial to those people trying to make a change,” said Kim.

Lindsey Robinson, trustee for the 13th District of the American Dental Association, noted that health disparities also extend to dental health and that 80 percent of the disease burden affects 20 percent of the population. In fact, she said, CDC recently released data showing that there has been a modest improvement in reducing the prevalence of dental caries in young white children, but not in Hispanics and African Americans. In some Native

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

American tribes, she added, 75 percent of the children under age 3 need to be treated in the operating room because their early childhood caries are so severe. Robinson asked Kim if there was anything about oral health in her project. Kim responded that oral health did not come up in the discussions with the communities she worked with because the focus so far has been on food. “If we had more time to think about other aspects of health disparities, it might have come up, but our role as facilitators was not to push them to think about an issue that we thought was important,” said Kim.

Jeffries wondered if those communities even know about the prevalence of oral health problems, and Wong noted that in the Alaskan Native population, the incidence of dental caries has soared over the past two generations. He suggested that embracing the knowledge of elders and their culture could play an important role here, just as it did when developing the walking game in Kim’s project.

Gem Daus, public health analyst at HRSA, asked the panelists if they could give specific examples of how digital technologies exacerbate disparities. Wong replied that one place that technology exacerbates disparities is seen in early adopters. “I see it in San Francisco, which is the heart of the digital divide, because you see so many individuals who are invested in their self-fitness and wellness while we have probably the worst homeless population in the country,” he said. “There is a divide and an exacerbation with regard to disparities because we see the fallout between people who are really high accelerators and early adopters of self-actualization strategies as opposed to population-level strategies to increase the wealth of health across a different community.”

Kim said that a project she recently completed in San Francisco implemented a mobile app for youth with obesity and depression to enable them to do self-tracking, look at their own behavior patterns, and work with a health coach. One of the most striking outcomes is the increase in the levels of patient activation. She thought there were several reasons for this increase in activation. Participants reported, for example, that they had never had a person, the health coach in this case, who just wanted to listen to them. They also reported that it was empowering to be able to look at their own data, decide what they meant, and then decide where they wanted to change if they wanted to change. That is self-efficacy that Kim believes will drive the long-term impact on the health of the participants. Returning to the question of disparities, she said that without the generous support of the Robert Wood Johnson Foundation, which enabled her team to purchase iPods for each participant, this intervention would not have been possible. “This is not something that public health departments can do,” she said. “They cannot buy these devices for every young person in San Francisco, so we cannot scale this unless there is a funding source.”

Robert Logan noted that large health maintenance organizations have

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
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reported more success over time with patient portals and health information technology interventions than any other health care institutions in the United States. He asked Wong for his opinion about whether that success arises because people have to make a commitment to become a member of one of those organizations and, in return, those organizations make a commitment to provide an early return on investment to its members by investing in user-friendly and useful portals and other digital health interventions. Wong replied that the question raised a relevant point and noted that Kaiser Permanente’s marketing surveys have found there is a culture of people who will never consider becoming Kaiser members, but that the 30 percent of the public who do become members, and he stressed the word “members,” stay with Kaiser Permanente. “People think of their relationship to Kaiser Permanente as a member as opposed to being a patient and as opposed to being a consumer. I think the member affiliation makes it easier to connect to people in terms of why would you want to have reminders, why would you want a health plan to tell you that you should walk or exercise 30 minutes a day,” said Wong. He also recounted a recent conversation he had with Kaiser’s former chief executive officer, who said that the organization is invested in making sure that its members stay healthy because it does not make money when its members get sick. Wong added that this idea is the foundation on which most of the historic health maintenance organizations were established.

Addressing Kim, Logan said that one of the challenges that NLM finds in working with Native American communities is that many Native Americans live in urban areas now, not on reservations. This is a larger problem, he said, because the health statistics for Native Americans living in urban areas are much worse than for those living on reservations, while at the same time there may be no urban Native American community with which to connect and draw upon when developing or enacting interventions. He then asked Kim how her model works when that sense of community is diluted significantly. Kim began her reply by explaining that her children are actually one-sixteenth Native American, but that they have never identified themselves as Native American on any Census or other survey. “That is often what you see both in the reservation communities and urban communities. Native Americans identify themselves as ‘multiple,’ which means that you might not even know how many people identify as Native American.” The question then becomes one of how to engage a community when neither the boundaries nor the identity of that community are clear, she said.

She then compared the work she and her colleagues have conducted with Klamath Basin youth and urban youth in San Francisco. In this city, the students identified with a school community, not an ethnicity. The connection to a community was absent when she worked with youth through

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

the San Francisco General Family Health Center. “They were the hardest to engage and keep in the intervention because their primary relationship was with a physician they rarely saw,” said Kim. The key, she added, is to think about the community that needs to be engaged, not necessarily the ethnic group. “To me, that’s a type, not a stereotype. A school is a type of a community, and it is not the stereotype in which every school community is like every other school community,” said Kim. The challenge, she added, is to identify the boundaries of each specific community.

A workshop participant then asked the panelists if they had any thoughts about how to convince the private sector that there is something to be done for chronic diseases such as hypertension, diabetes, HIV, renal disease, tuberculosis, and others in underserved populations that do not have money to spend, yet need help the most. Kim, who noted that she has spent most of her career in the private sector before moving back to academia, said the private sector is not necessarily driven by return on investment, but rather by profit, and there is profit to be made in population health. “What the business model is I don’t know yet, but there is money to be made in population health because we are all trying to improve population health,” Kim said. “There is research money going into that. There is health system money going into that. There is public health department money going into that.” She noted that there was a Robert Wood Johnson Foundation Quantified Self Public Health workshop being held in which the conversation was going to be about how to bring those in public health and community health together with technology people and develop a business model that incentivizes companies to take on this mission.

Dean Hovey said the key is to remember that people in the United States want to serve and help. The challenge is to identify those individuals and companies in the private sector and in the foundation sector that care and stimulate their interest and involvement in this area. He noted that the for-profit projects that his company is working on are spilling over into other less profitable applications. He reminded the workshop that Apple was always generous about putting computers into classrooms as a foundation for later business. Wong added that one-third of all Californians are covered under Medicaid today, so by definition that is a low-income group, yet there is money there. He also commented that there are businesses in the retail sector that market specifically to lower-income communities and they have figured out how to be profitable. “I think that there is going to be some segmentation with regards to how technology is starting to be parsed out to different population groups based on their discretionary income, just as there is in retail,” said Wong.

As a final comment, Laurie Myers provided a quote from George Merck, the founder of her company, who said, “We try never to forget that medicine is for the people. It is not for the profits. The profits follow,

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
×

and if we have remembered that, they have never failed to appear. The better we have remembered it, the larger they have been.” She recounted this quote to remind workshop participants that no matter where people come from, they still need help, and this community has the responsibility of making sure they get that help. From her perspective as someone who has been thinking about how to apply universal precautions to all of her communications with patients, she said she believes digital health can help with this. The challenge will be for big companies such as hers, where things do not happen fast, to work with small, nimble technology companies to address these needs in a way that benefits the health of the nation sooner rather than later.

Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
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Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
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Suggested Citation:"5 Health Information Technology and Selected Populations." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy and Consumer-Facing Technology: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21781.
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The proliferation of consumer-facing technology and personal health information technology has grown steadily over the past decade, and has certainly exploded over the past several years. Many people have embraced smartphones and wearable health-monitoring devices to track their fitness and personal health information. Providers have made it easier for patients and caregivers to access health records and communicate through online patient portals. However, the large volume of health-related information that these devices can generate and input into a health record can also lead to an increased amount of confusion on the part of users and caregivers.

The Institute of Medicine convened a workshop to explore health literate practices in health information technology and then provide and consider the ramifications of this rapidly growing field on the health literacy of users. Health Literacy and Consumer-Facing Technology summarizes the discussions and presentations from this workshop, highlighting the lessons presented, practical strategies, and the needs and opportunities for improving health literacy in consumer-facing technology.

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