The workshop’s final session focused on reflections on the day’s proceedings. Rima Rudd said she was encouraged by the shift in focus from the individual to the community. “Once you are talking about community, the potential for change and action is grand,” she said. With asthma, for example, a focus on community starts a conversion on housing stock, air pollution from idling buses, and changing traffic patterns to deal with the larger triggers of asthma in an entire community. Wilma Alvarado-Little echoed those comments and added that one challenge in working with communities is overcoming the suspicion that researchers are going to tell them what they want rather than truly listen and learn about what the community believes it needs. She noted, too, the importance of considering language when working with communities in which English may not be the first language for many community members. “We have to question in what language do they get sick and in what language do they access their emotions,” she explained.
Rudd was also buoyed by the fact that there is renewed attention to formative research rigor and to the importance of understanding the people who make up the intended audience before creating an intervention and then iteratively piloting to see how best to produce change with that audience. “We do not allow drugs on the market without that rigor, yet we allow messages and information on the market without rigor,” said Rudd. “Information that is not accessible cannot be accessed by anyone.”
Stacey Rosen, associate professor of cardiology at Hofstra North Shore–Long Island Jewish (LIJ) School of Medicine and vice president for women’s health at the North Shore–LIJ Health System, identified as
important the emphasis on creating truly customized approaches to using health information technology to reach specific audiences and the value that each individual gleans from comparing his or her data to that of their community. She also noted the importance of the end users, including patients, care providers, and community members, being involved in the creation of these interventions, as she believes the current state of EHRs is tied to the fact that they were created without this kind of input. Terry Davis reiterated the importance of designing technology in collaboration with the end users, but also pointed out that it still may be necessary to teach people how to use these technologies and to make them more user-friendly.
Christopher Dezii said he got the message that apps are not a panacea, but are merely a tool that may or may not be useful, depending on patient needs. Given that the prevalence and penetration of technology is going to be different 20 years from now than it is today, he believes the field needs to find apps that are successful in today’s world, but also prepare for the world 20 years from now, when prices will come down to a point that just about everybody can have whatever his or her children have today. He also felt that the linkage of technologies with providers was another important issue that the field needs to address. Interoperability has to be a key, not just among apps, but among providers. He remarked that he had the sense that health literacy and patient education are still considered a luxury that is always just behind something more important. Changing this attitude will require providers and health care systems to be accountable for health literacy via performance measure development connected to reimbursement policies. He said patient engagement measures need to change from just checking off a box that patients were engaged to determining whether patients understood the information conveyed by their care providers.
Robert Logan concluded from Alex Krist’s findings that seniors used the portal he studied more than expected while young adults used it less to mean that socioeconomic characteristics may not predict engagement for sustained use along preconceived lines, raising the question of how best to develop the conceptual framework for evaluation metrics. Inclusion of health literacy as a conceptual framework and its inclusion as part of the evaluation instrument might help to better predict patient engagement, sustained use, and other desirable outcomes, he said. He also remarked that roundtable discussions could be helpful in demonstrating how the addition of health literacy is useful conceptually in app and website development, that it contributes to better understanding of intended users, and that the addition of health literacy as a measure is a useful component for evaluating patient portals, health apps, and health literacy websites.
Terri Ann Parnell, principal and founder of Health Literacy Partners, applauded the speakers on the third panel for the work they were doing, saying that, in her opinion, they have demonstrated that access is a central
issue that needs to be addressed. She also took away from these presentations the idea that trust, face-to-face communications, building relationships, and community engagement are critical to the success of digital health technology. “We need to bring together the patient or the consumer along with the professional and community along the journey so that we have a product that is useful and meaningful to all,” said Parnell. Even with easy access, a technology that is not meaningful to the users will not be used. Michael Villaire, however, said he is very concerned about the issue of access and the disparities between those who can get and use these applications and those who cannot.
Laurie Myers said she wanted to reiterate the importance of the system factors in facilitating the adoption of health technology. Taking a team approach is critical, and the challenge is to figure out how to take advantage of teams to help address and reduce health disparities. “Some of the evolving payment models may help with that,” said Myers. Incorporating the new types of data that will be available into workflow and making them actionable will be a challenge that will likely require the development of filters to sort out the data that can actually help improve patient care. Also needed will be the evidence showing that these data lead to improvements in quality and patient outcomes. She applauded the job that the panelists did in talking about the importance of community-based participatory research and said that she believes there are probably lessons from the gaming industry that the field can learn with regard to stickiness and simplicity. Myers also noted the importance of aligning incentives to things that are important to the end users.
Lori Hall, a health education consultant to Eli Lilly, noted how the day’s presentations changed her perception that most health information technology interventions were aimed at people who are already engaged, activated, and confident in their care. She now understands that technology developers first seek to understand and listen before making assumptions, and when used in partnership, technology is a tool that can address the needs of communities that are not as engaged in their health care. “Ultimately, this is a statement about technology being important, but that it will never replace empathy,” said Hall. Earnestine Willis voiced the same optimism. She reiterated that the message she got from the presentations is that any technology must be relevant to a specific population and it must avoid being designed to serve stereotypes. “We tend to want to say we must make the community fit into our randomized controlled trial box, but I would say this is an opportunity for us to come up with new methods, new analyses, and new methodologies that we can use to begin to get a better picture of these communities.” She also noted that taking the opportunity to learn about targeted communities creates the chance to tap into the
creativity in these communities to develop novel approaches to increasing health literacy and community health.
Marin Allen, deputy associate director in the Office of Communications and Public Liaison, and director of public information in the Office of the NIH Director, remarked that something magical happened over the course of the day, and she credited Kim. “What she did for us is exactly what Dean Hovey started out with; she created the story arc that I would guess is the one we will find most memorable from this meeting,” said Allen. She also commented to Winston Wong that it is necessary to look at resilience as well as disparity to tease out the effects of aggregation about which he voiced concern. As a final comment, she said it is important to start thinking about what communication means in all of its nuances.
Villaire thanked the afternoon panels for showing examples of how to design appropriate and useful technologies and hoped that some of these things can be replicated in other communities. He then said he believes the issue of mobile health technology juxtaposed with health literacy is one of context. “How do we as some of the experts in the area of health literacy provide our expertise to provide context for the information that is being developed?” he asked, particularly as the population’s familiarity and comfort with technology changes in the years ahead. He predicted there will be a shift from today’s situation in which both researchers and consumers are trying to catch up with the technology to one in which developers will be trying to catch up to those who are using technology. “I’m hoping that these digital users become more demanding of what they are asking from technology,” said Villaire. He hopes that in the future, end users would be demanding context for information, not just data, and stated his opinion that “it is our role to act as influencers and mediators in this area to be more demanding and make sure people not only understand these devices or technology, but are able to take that information and apply it, which is our definition of health literacy.”
He also responded to a comment made earlier in the day about developers winning contests and then moving on to develop the next app. “Maybe what we need to do is incentivize the developers to go that step further and say you will be rewarded on some kind of whatever the basis is, a commissioned basis or whatever, to the extent that these apps and these technologies start showing results,” said Villaire. He added that part of the responsibility of a technology developer is to take that next step and find out whether these are tools that people can understand and use to improve their health.
Margaret Loveland, senior director of global medical affairs at Merck, commented on the importance of attending to privacy concerns given that many of the members of these culturally diverse and economically disadvantaged communities have trust issues. “If we do not address this pri-
vacy issue so that they can feel confident, especially when we were talking about the apps and how their information gets transmitted, they are not going to be using them,” said Loveland. Today, the majority of people use apps to gain information and they do not expect that their information is going to be delivered to anyone else, she explained. She also remarked that the apps themselves can create new communities if they are well designed.
Gem Daus commented that there are two aphorisms that he has been thinking about: If all you have is a hammer, every problem is a nail, and information in and of itself does not change behavior. The presentations made him think of a corollary, which is that technology in and of itself does not change behavior. “We need things like community, and listening, and to connect investment with some measure of outcomes so that we are not just fascinated by these new toys,” said Daus.
Although apps and other health technologies need to be simpler for the patient and consumer to use, Kim Parson, strategic consultant on Proactive Care Strategies for Humana, said they will have greater value if they are also easy for members of the care team to use. To have a large impact, these technologies need to get rid of the noise for the physician and move away from just providing data, to a place where they can help set goals for the patient’s health, said Parson. The ultimate value of health literate technology, she added, comes when it connects the patient and all the members of the patient’s health care team. “When it can be truly connected, then it can be actionable and valuable to all of us,” said Parson.
During the course of the presentations, Lindsey Robinson was wondering where her stakeholder group, those concerned with oral health, fits into this conversation about technology. But she came to realize that it fits in everywhere given its role in diabetes, obesity, cardiac disease, and pregnancy. “I would hope that somewhere in the conversation, oral health would be a component of understanding the impact in all those conditions,” she said. In particular, she came back to the statement that only 10 percent of health is related to health care and commented that the best way to impact and improve oral health is through conversations in communities, and imbuing cultures with the understanding of how important oral health is to overall health. In so many cultures, she noted, there is little understanding of this connection or of the fact that tooth decay is not inevitable and that they do not have to suffer the same fate as their parents, who may have lost all of the teeth by the time they were 25 years old. She implored the audience to include oral health in any program, including those such as text4baby, designed to improve a population’s overall health.
Suzanne Bakken said she was taken by the notion of a learning health system—not a learning health care system—that includes consumer-generated data. From that perspective, it is important to create a fabric of trust for the digital infrastructure in a learning health system that encour-
ages consumers to both contribute and use data. In that respect, it is essential to make sure that the terms of agreement truly inform consumers about how their data are being used and whether those uses are for a social good or for commercial gain. “People need to be aware of those choices,” said Bakken, who said she wanted to see the roundtable apply its expertise on health literacy to learn about and share new approaches that can help consumers really know what they are getting into when they contribute their data as a vital part of a learning health system and so they can do so willingly and with trust in the system.
Winston Wong, noting that the day was both informative and dense with information, described a taxonomy for defining populations that he constructed to help him deal with all of these ideas. Patients form the first level of this taxonomy, and patients can be categorized as individuals with an acute problem, individuals with a chronic problem, and individuals with some sort of maintenance of health or some sort of malady. “I think you have to look at each one of those aspects of being a patient differently in terms of how to construct a health literacy strategy,” said Wong. Consumers make up the second level given that consumers have distinctly different expectations than do patients, and members represent the third level. “I think a member connotation is different than a consumer and patient because members expect something with regard to how they interface with what whichever entity they belong,” said Wong. The fourth level is community and how technology can be used to facilitate the kind of interactions and engagement between the health system and a given community. When thinking about health literacy, he explained, “It behooves the producers of health technology, as well as the individuals on the health care team and the spectrum of health care providers that extends beyond the walls of the clinic, to consider the operational and critical elements that we have cultivated in our understanding of health literacy.” Health literacy, he concluded, becomes a critical strategy that is implemented at every one of these different levels of engagement among patient, consumer, members, and community. “I think we need some work to figure out what are the critical features of health literacy as we think about how we move forward in all of these different parts of the engagement hierarchy,” said Wong.
Alicia Fernandez said she was struck by two things. One was how embryonic this field is, with so little known about what works and what does not work. The second was the next topic for conversation should be about levers, for she fears that many of the health technologies discussed over the course of the day are ripe for market failure. As an example, she noted that she recently tried to find a very simple cell phone for her mother, who is starting to experience cognitive difficulties. She was willing to pay any price for such a device, but she could not find one. “It was in that way a complete market failure even though there must be millions of people like
my mother who would need a product like that,” said Fernandez. What she wants to hear, then, is about the levers that government and health systems and organized medicine and others can use in terms of clarity of standards, ethics, privacy, and other concerns. This would help developers create technologies that are needed and useful.
Steven Rush, director of the Health Literacy Innovations Program at UnitedHealth Group, commented on how this workshop reinforced some of the thoughts he has had about health literacy and technology. It also opened his eyes to a number of issues. One has to do with the number of health-related apps available. “If we think about health literacy as something that is accessible, accurate, understandable, and easy to use and we apply that to what we talked about today, which of the 40,000 to 50,000 apps out there are good? I think that is something that we may want to think about,” said Rush, referring to the accuracy and usability of these apps. He applauded the emphasis that the day’s presentations placed on including community, together with patients, consumers, and providers, in the technology development process, and he pointed out that consumers may not be able to understand the burden of using a particular app or they may not understand that an app may not produce data that can actually help them better manage their health. He also underscored the issue of sustainability and the importance of person-to-person interactions that can reinforce the value of using a particular app.
Catina O’Leary noted the high level of energy that the presentations and discussions had generated, and the incredible diversity of the technologies that are being developed and deployed to help a wide range of audiences better manage their health. She believes this bodes well for the future. One challenge, she said, is helping people select the best or necessary option from among all the choices they have for the particular context in which they want to use a particular app, wearable device, or website. “These are higher order cognitive decisions that not everybody is equipped to make on their own without help, so who are the helpers?” she asked. One possibility she noted is to draw upon the expertise of community health workers, who she believes are poised to help with some training. She also appealed to the developers in the crowd to think about an app that would help consumers manage their health insurance in the context of their health.
The importance of community was also stressed by Jennifer Dillaha, particularly with regard to reaching those people who truly struggle with low health literacy and with interacting with and navigating the health system. “It becomes incumbent on the health system to provide navigation, care coordination, and case management—that flip side of health literacy,” said Dillaha. She also said that the health system is going to have to reconfigure itself to help patients and consumers deal with the data that these new technologies will generate. “There are going to be many people
who cannot use their patient portals,” she said, “and to have a system that is truly person-centric, we will have to reconfigure ourselves.” Relying on community will be one way to accomplish that task, she noted.
Michael Paasche-Orlow supported the call he heard in several presentations for participatory evaluation and research from the beginning through the end of a project. He suggested that health literacy could be a fulcrum for building and assessing these systems. He agreed with Fernandez’s worry about market failure, but noted that “the market will take care of the digerati. The question is, how do we as a group call the market to take care of the vulnerable population?” said Paasche-Orlow. He also agreed with Wong’s notion of a taxonomy, but was of the opinion that it was a nice way of saying that too many of these apps are rudimentary and are reacting to situations rather than asking how patient-centered health information technology can be created that meets the real needs of patients and consumers.
Linda Harris remarked that while most of the presentations over the course of the day were about apps, she wanted to recount one story of a system that has gone far beyond apps. The U.S. Department of Veterans Affairs (VA), she said, has a program that it started in Florida in which a social worker and a provider go into the home of the most vulnerable veterans, those without much education or income, most of whom are retired. The social worker and provider do an assessment of that family’s situation and then bring in a simple, text-based phone system that the patient or family member can use to alert the case worker that there is a problem, such as when a patient has reached a particular pain threshold. In that case, as soon as the case worker receives that text, a message would go out to a pharmacy in the patient’s community and a pharmacist would be dispatched to the patient’s home. What is nice about this system, said Harris, is that it is patient driven, data driven, and outcomes driven, and in fact, the VA has shown that this system dramatically reduced unnecessary hospitalizations. Harris noted that the VA has now expanded this system nationwide. What this example demonstrates, said Harris in concluding the discussion session, is that improving care is not just about apps, but rather is about creating technology that is patient driven and that lets a patient be a partner in his or her own care.