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Health Literacy: Past, Present, and Future: Workshop Summary (2015)

Chapter: 6 Looking to the Future

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Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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6

Looking to the Future

Instead of using formal presentations, the workshop’s fourth panel session featured a moderated discussion about the future of health literacy. Terry Davis, professor of medicine and pediatrics at Louisiana State University Health Sciences Center in Shreveport, moderated the session. The four panelists were Betsy Humphreys, deputy director of NLM; Winston Wong, medical director for Community Benefit and director of Disparities Improvement and Quality Initiatives at Kaiser Permanente; Steven Teutsch, adjunct professor at the Fielding School of Public Health at the University of California, Los Angeles; and Michael Wolf, professor of medicine and learning sciences at the Feinberg School of Medicine at Northwestern University.

THE ROLE OF TECHNOLOGY IN HEALTH LITERACY1

Davis started the discussion by asking Betsy Humphreys about the role that technology might play in health literacy over the next decade, and her response was that technology, if done correctly with input from users, could make a significant impact on the integration of health literacy into all of health care by making the job of being a patient easier. In her opinion, despite the dozens of health literacy–related apps that are now available for mobile devices, none of them have yet reached the level of sophistication or utility that would make them must-have apps. Humphreys noted,

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1 This section is based on the comments of Betsy Humphreys, deputy director of the National Library of Medicine, and the statements are not endorsed or verified by the IOM.

Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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though, that technology could be a game changer as far as getting more health care professionals and patients onboard with health literacy simply by being something new and interesting that people want to play with and test themselves.

Humphreys also noted that NLM does fund a small number of health literacy projects, and that other NIH Institutes, such as the National Cancer Institute, have done a great deal with regard to creating health-literate information for patients and developing novel ways of getting such information into the hands of patients and families. One of the things that NLM and other NIH Institutes have done well is to engage end users in the development and testing of new technologies for interacting with patients. For example, NLM funded a study in which the researchers asked the elderly about health alert devices. Most seniors, it turns out, do not like these devices because it makes them feel and look like an old, sick person. What they want instead is a watch, something that does not send the signal “I’m old and feeble,” yet can place emergency calls with the push of a button. Davis asked if the private sector will be the source and driver of such innovations. Humphreys replied that the private and public sectors both have a role to play in technology development. She added that NIH is focusing small-business research funds in this area.

Davis then asked Humphreys about the role that social media and blogs can play in health literacy, to which Humphreys replied that the public already uses social media to get information they think they understand on medical issues, and that agencies such as CDC, NIH, and NLM are already creating information for social media platforms, which Humphreys characterized as a good development. The problem with social media, for all of the good that it can do, is that “there’s nothing to prevent anyone who uses social media from saying whatever they want about whatever health information or misinformation they have,” she said. Given the reach of social media, incorrect information—the misinformation about the link between autism and vaccines, for example—can spread in a broader manner that is more difficult to control and correct once it has made it into the realm of social knowledge. The only way to counter this type of misinformation is to make sure that the public agencies and foundations that produce high-quality health information for the public do so from the start in a way that is interesting, engaging, understandable, and accessible, or as she put it, “to make it easier to find the good stuff than it is the bad stuff.”

Going forward, NLM’s main role in health literacy will be to organize all of the great information that is coming out at the appropriate literacy level and to help make it available in multimedia formats that communicate in ways that the written word cannot. Another role will be to make research available on what works and what does not in terms of technologies for disseminating health information and to do so not just for the public, but

Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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for the professional community as well. In general, NLM will not be translating materials—there are organizations that do this well already—but will focus on organizing it, collecting it, and making it easily accessible to all audiences, not just the technologically savvy.

Davis asked Humphreys if she thought print medical journals would still be available in 2024, to which Humphreys replied that she does not think those would still exist in 2024. What will develop, though, are more avenues for personal interactions with vulnerable populations to help them understand health information, and that this is a role in which libraries excel today. Libraries and librarians have very good reputations among the general public as trusted, unbiased sources of information. A library is seen as a clean, safe place to take children and a librarian is seen as someone who is going to be friendly, not someone who will be condescending or dismissive of questions. “I think that the library community is a great partner resource for literacy in general, but definitely for health literacy,” said Humphreys. She added that she envisions that libraries in 2024 will not be much different than they are today—they will be pleasant, centrally located in every community, and staffed by friendly, knowledgeable persons who are ready to help the public find useful information. “Talking to a helpful person is not going to go out of style,” she predicted.

HEALTH LITERACY AND POPULATION AND PUBLIC HEALTH2

Next, Davis asked Steven Teutsch to comment on the connection between health literacy and effective population health interventions and their need for public support to be most effective. Because social determinants account for about 40 percent of the health problems facing Americans, with health behaviors accounting for another 30 percent and the physical environment an additional 10 percent, we need to deal with those non-clinical factors to have a substantial impact on the nation’s health. To do that the public first needs to understand the importance of these nonclinical factors, and this is particularly true among the most disadvantaged people, the ones who are suffering the greatest health disparities today. Getting people to change their lifestyles and getting governments and other organizations to develop policies that support those changes is going to take social and political will, Teutsch said, and that takes understanding of what the nature of those problems is and what the potential solutions are.

Population health has adopted the health in all policies mantra to make sure that the nation develops interventions in all areas that support health,

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2 This section is based on the comments of Steven Teutsch, adjunct professor at the Fielding School of Public Health at the University of California, Los Angeles, and the statements are not endorsed or verified by the IOM.

Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
×

whether it be for transportations systems, street design, or criminal justice. “Political leaders will benefit by engaging with the health sector so that the health implications are on the table and in their thoughts when they make decisions. We have tools such as health impact assessments that can further those discussions,” said Teutsch. He added that while health impact assessments are not often seen as health literacy tools, they actually are because they can help people understand the problem and the health implications and understand how decisions about adopting a policy or modifying a program can maximize health benefits or minimize the harms.

When asked if he sees the process starting locally or if it will take a national agenda, Teutsch said it will take action at all levels. Problems are usually spotted at the community level, where information must be available to help catalyze action. At the same time, state and federal policies can have a huge effect in supporting or hindering local action and so again, information for policy makers must be available to help them make decisions that support public health goals. For example, Los Angeles has relatively few parks, so local communities are agitating for school playgrounds to remain open after school hours so that children have a safe place to play and where community members can get together and meet. How that gets done is a local issue. At the other end of the spectrum, federal agriculture policies and subsidies affect the availability of healthy food in communities and schools.

Teutsch noted that messages about the benefits of public health interventions do not need to reach everyone, but they do need to reach thought leaders who can drive change and mobilize communities to take action to benefit the health of their residents. Just as it is necessary to use health literacy to empower individuals to take responsibility for their own health, it is also important to use public health literacy to engage communities in the effort to improve public health.

Davis then asked Teutsch about the importance of trust when it comes to public health information, particularly with regard to vaccination. He explained that in California, parents can opt out of having their children vaccinated based on personal beliefs, and the problem is that too many personal beliefs about vaccination are formed based on misinformation being promulgated by blogs and celebrities that some members of the public consider more credible than health care and public health professionals. This problem is compounded by the fact that too many public officials have just as low a level of scientific and health literacy and do not have the kind of competence needed to address unreasonable fears, whether it is about vaccines or Ebola, or to promote preventive health measures such as vaccinations and cancer screenings.

In terms of addressing social determinants of health and the other nonclinical factors that influence health, improving the health literacy of indi-

Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
×

viduals will help, but the focus should not be limited to individuals, Teutsch said. “We need to create the environments that make the healthy choice the easy choice, so that it is as easy to walk to work or use public transportation as it is to hop in the car and drive,” he said as an example. Making the healthy choice has to become a natural part of daily life, and that becomes easier when the physical environment and the messages consumers receive support a healthy lifestyle. Toward that end, Teutsch is encouraged by the newfound focus of health systems on public health and their growing appreciation of the fact reimbursements are going to be determined in part by the health of their communities, not just the patients they happen to treat. Davis agreed that a tipping point in that regard may be at hand and that those attending and participating in this work are in a position to help get the nation on the other side of that tipping point.

RESEARCH ON HEALTH LITERACY3

Turning to the matter of health literacy research, Davis asked Michael Wolf if he believed, as she does, that the field may have lost its creative spark and is too focused on securing research funding rather than on thinking about problems and meaningful ways to address them. He said he appreciates the feeling that there’s a bit of stagnation in health literacy research today, and he agreed there is a very challenging environment regarding research funding. There is also the challenge of deciding between what the field knows how to do and what is reasonable given the huge culture change that is needed to embrace all of the activities that health literacy research has shown are effective at improving communication between consumers and the health care system. What is needed, he said, is to figure out a better way to inform the health care community and funding agencies about the benefits of health literacy and to think about what the research community wants from existing funding programs.

As an example of the latter, the first program announcement from NIH about health literacy came out in 2004, and that program is still in place. When it was created, it had associated with it a special emphasis panel to protect funding and to create a consolidated agenda, and Wolf applauded those involved for making that happen and for bringing the field to where it is today. “The problem has been that we have lost steam,” said Wolf, and he recounted being asked by a program officer attached to a specific NIH Institute to provide more information about what he was doing because many people in his Institute did not see the value of health literacy. Such

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3 This section is based on the comments of Michael Wolf, professor of medicine and learning sciences at the Feinberg School of Medicine, and the statements are not endorsed or verified by the IOM.

Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
×

an attitude in NIH has left him skeptical, confused, and concerned about the future of this program.

Wolf said he views the world of health literacy as a core piece that fits into many other areas of research, much like Russian nesting dolls. Health literacy research sits within health care equity and disparities, but it is also a component of safety, and issues around aging or special populations. The challenge, then, is to see how health literacy can fit into these other agendas. In reaction to that comment, Davis asked Wolf if he thought health literacy would still exist as a distinct field of research in 2024. Wolf said he believes that for the next 3 to 4 years, health literacy will continue to be myopically focused on how it is associated with one condition or another. One benefit from this is that an increasing number of studies and grants that he reviews, whether they come from a health literacy researcher or not, include health literacy as a covariant factor in models designed to study some other health determinant. That is an important development, said Wolf, because it means that people are measuring the impact of health literacy on a wide variety of outcomes.

The challenge to the field, though, is to find a way to develop and promulgate measures that will indicate whether increasing literacy is “pushing the field on outcomes” and that there is a “business case” for paying attention to health literacy. “How do you develop the business case for a health system to say it wants to do this, to adopt one of these toolkits, to start making these changes when there is no mandate in front of them?” asked Wolf. Getting to that point, he said, means that the field needs to start consolidating its work and looking at how other fields of study are doing what we would likely refer to as health literacy research.

Davis then asked if Wolf sees research shifting to trying to evaluate corporations and health systems rather than on whether the field is moving the needle on cancer, diabetes, or other specific health issues. Wolf responded that his perspective as a health services researcher in a school of medicine is to think about how to change or redesign clinical workflow or practice of a health system attribute in order to improve care and engagement of patients. He then wants to see research that not only looks at whether an intervention improved outcomes, but tries to understand how difficult it was to implement change in an organization. From that perspective, he said, “I think health literacy has given us a very pragmatic, a very touchable kind of research agenda that in some ways is the reason why so many people love this field. It is one of the best branded research agendas I’ve ever encountered, and it’s so malleable, and it also allows people to really kind of grasp the complexity and the need to simplify.” What will be important going forward is to find ways of disseminating this knowledge in the absence of mandates, such as those in the United Kingdom and Europe that mandate testing patients for understanding.

Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
×

As a final question for Wolf, Davis asked where the money is going to come from to conduct this research and develop dissemination methods for health literacy tools in the absence of such a mandate. Wolf replied that the future of funding for this field rests on having a special emphasis panel and a program announcement that drives this research and that will allow for the consolidation he believes must happen. Unfortunately, he said, the current panel concerns him because its membership is shrinking and no longer has many members who understand the concepts and the importance of health literacy. “Keeping those protections in place, having more institutes involved, and quantifying the value of this research they have funded over the years is going to be important,” said Wolf. He added that industry is starting to understand the value of health literacy when it comes to marketing new devices or drugs, and so it will be important to reconcile how the field works with industry going forward. Wolf noted in closing how important it is that foundations have become engaged in the health literacy movement.

HEALTH LITERACY AND DISPARITIES4

Addressing the final panelist, Winston Wong, Davis asked him to describe his dream of eliminating health and health care disparities, and he began by first saying that he is optimistic that this can in fact be done. “But part of the challenge is to change the vernacular as well and stop talking about health disparities and start talking about health equity,” he said. “If we have health equity squarely in the picture of what we want to achieve as a nation, we’re going to actually make much more progress in terms of identifying where disparities exist and in trying to plug the holes.”

Thinking about health disparities and health equities work over the past 20 years, Wong said the focus of the first wave of work was on racial justice and concepts such as unconscious bias, access issues, a disproportionate lack of opportunity, and so on. Also, much of the discussion 20 years ago was on cultural competence from a perspective of race, nationality, immigration status, and other factors that compounded the difficulties people had in terms of gaining access to health care. Over the past decade, however, place has become as important a part of the discussion of health equity as race, and there is the awareness that a person’s zip code is a more important determinant of health than his or her genetic code. To the point that Teutsch made about the physical environment, place matters as a proxy for understanding the social determinants of health in terms of whether

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4 This section is based on the comments of Winston Wong, medical director for Community Benefit and director of Disparities Improvement and Quality Initiatives at Kaiser Permanente, and the statements are not endorsed or verified by the IOM.

Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
×

communities have access to jobs, fresh food and recreation, educational opportunities, and health care, said Wong.

It is not that place trumps race or that race trumps place, he said, but that there is a confluence of factors that produce health disparities and the recent understanding that a person’s environment can produce certain health-impacting stressors that others living in more hospitable environments do not experience. Wong referred to this last idea as “fate happens,” and he said there is a new appreciation for how fate, as determined by where someone lives, can have a disproportionate impact on the burden of disease and the development of chronic disease. The question for health care providers, then, is how to interface with all of these elements and by extension to determine how health literacy fits into an honest discussion of how individuals understand their health and how they understand the value proposition for making changes that improve their health.

The bottom line, said Wong, is that the discussion is starting to mature and to reflect an understanding that there is more than one issue involved in health literacy. The discussion today is about how all of these factors interface with one another and about the complexity of how individuals, and thus communities, are able to interact with the health care system. He added that there are many implications about this maturing discussion for how health plans such as his interface and support community development and individual empowerment.

Davis then asked Wong for his views on some initial steps that the field could take to further this discussion. Wong reiterated statements by other speakers at the workshop that the quality of health has to be considered in all policies and that equity has to be at the center of how we develop a quality health care system. He said that he would push for all health care systems, all health care providers, and all entities that say they are concerned about public health and community health to measure how any policy will achieve equity in health care and access to health care. He said he would also push for the development of a set of core metrics that embody the issues of equity, one of which would measure health literacy. “How does health literacy become part of the calculus from which you understand how health equity is achieved in a given community or given target population?” asked Wong.

As far as the role that he sees health literacy playing in achieving equity and whether the field was promising more than it can deliver toward that end, Wong recounted a discussion he had recently with the leaders of Kaiser Permanente regarding the non-medical social needs of members and patients. The question came up during this discussion about what the core conversation should be with individuals when you see them for 15 minutes per year. “What is the core conversation that resonates with them in terms of what it means to go on this journey of being as healthy as possible,” said

Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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Wong. “One interesting proposition is that we should start the discussion with every person we come in contact with by asking ‘what does a good day mean to you,’ because that’s really a much more important question than ‘what hurts’ or ‘have you been taking your medicine today.’” That question, he said, reflects the fact that medicine can help with some problems, but what ultimately makes for a good day for someone is determined by a constellation of actors that foster good health. “As a health plan, we have to start thinking about what do we do to proactively address what makes for a good day,” said Wong.

As to whether it is possible to measure all of those social determinants, Wong said that one challenge is to move measurements of health literacy away from just the clinical interaction and to consider the value proposition to individuals about the decisions they make that enable them to function at a desired level of happiness. Capturing that in a way that can be used by the entire health care arena will enable health care systems to better craft messages that will help people make smarter decisions that benefit their health. Doing so will require asking individuals if their health plan or health provider meets their needs to live the best day possible, and those kind of measures, said Wong, have yet to be developed. Ultimately, he said in closing, it will be necessary to have measures that health care organizations can use to determine if the money they are investing in crisis-oriented, intensive chronic care centers is providing real value for the individuals and purchasers of health care in terms of preventing high-cost intensive medical therapies.

DISCUSSION

George Isham started the open discussion period by asking Wolf to describe a research agenda around measuring and describing complexity, and specifically, how it might be possible to engage in all of the many aspects of complexity in terms of the universal precautions approach or a tailored approach to help people help themselves. Wolf replied that the evidence of complexity can come from the studies that focused on individual skills if the observed markers are framed differently. For example, if the majority of individuals in some patient population or consumer group are struggling to understand something, that is actually an indicator of the evaluation of complexity of that particular task. Ideally, said Wolf, the assessments would be refined enough to understand what parts of the task are so complicated and to then redesign the learning task or to support the task differently. He remarked that what researchers need to continue measuring is how people are performing with what they are being given. “Otherwise, we won’t really understand from our end how we’re doing,” adding that much of the information that is given to patients has had little forethought in terms of what is being asked of the patient, whether it is in

Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
×

a discharge instruction, after visit summary, or medication label. “I think that we still have to think about the individual skills measures or the individual task performance measures as attributes not of the individual, but of actually what we’ve designed for this system, and those could be ways for us to continue to assess how we’re doing,” said Wolf.

In terms of translating that kind of research into an agenda for health care systems that could be used to describe how complex health care is at one health system compared to another, Wolf said it would be useful to have something resembling a Joint Commission quality ranking related to the complexity of a system and its performance. Many of the toolkits available today are trying to set standards against which complexity could be measured and that health systems can use as benchmarks in their efforts to simplify their systems and be more accommodating to the needs of the specific populations they serve, given where they are located and the demographics of those communities. He said that satisfaction measures and feedback from patients can serve as an indicator of how well a system is doing in terms of reducing complexity, engaging its community, and enabling patients to do what they are being asked to do to improve their health. The key, though, will be for health systems to actually use the tools that Rothman identified to start measuring health literacy and organizational performance.

Going back to the question of whether the field has lost its spark, Humphreys wondered if someone were to come up with a truly brilliant new idea if they would be able to get funding to develop and test that new idea. Davis responded that some of the most fun and creative research that she did was in collaboration with a group of researchers based on findings in the literature and with no funding. Instead, she and her collaborators used medical students and sent them forth into the clinic to test this idea. Wong remarked that he believes that funding is available for applied research in the context of care transformation given the pressures that health care systems are under to demonstrate the value of the services they are delivering in terms of outcomes. Put into that context, health literacy studies will find funding. Wolf agreed and added that health systems are starting to appreciate the need to measure the degree of engagement with their patients and community and that health literacy fits into that need.

Yvette Morello with the March of Dimes noted that organizations such as hers are also sharing information with people that they call consumers because they are not providing direct care or giving medical advice. She encouraged the research community to work with other organizations that are communicating with consumers outside of the actual clinical setting. Humphreys agreed that this was an important point, which triggered a question from Isham, who asked Humphreys how a librarian, or NLM, goes about vetting the many branded information sources on the Web in terms of its reputation and the accuracy and utility of the information these sources

Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
×

provide. Humphreys replied that all libraries are selective in the materials they use. NLM has published guidelines for how it selects the information that it organizes, and points to within MedlinePlus, for example, and other organizations use these guidelines in their own selection process.

Humphreys noted that she and her colleagues partner with many organizations, not just libraries, but public health departments and community-based organizations, in terms of reaching out to underserved populations to help them find information and understand the quality of the information available from various sources. Through these efforts, consumers learn to look at the context of the information; for example, is drug information right next to an ad about how to buy that drug or is information about a surgical procedure coming from a surgeon’s website with a link at the end of the information to make an appointment?

She also commented that reputable sources can have information that turns out to be incorrect, such as in the case of the study that professed to demonstrate a link between vaccination and autism that was published in a reputable medical journal. By the time it was retracted, there was a vocal group of people who nonetheless felt the article was accurate and that there was some conspiracy behind its retraction. Nonetheless, she has heard stories from her colleagues who do health information outreach at health fairs, senior centers, churches, and community centers that most people do have a healthy skepticism about information and that they do exercise good judgment about the veracity of information sources.

Ruth Parker asked the panel to talk about what cost, transparency, and value-based care might look like in 2024 and how it might affect vulnerable populations and what role health literacy might play in providing value-based care. Teutsch replied that from a population health perspective, there is a major move afoot to look at the economic and health returns of interventions outside of health care, such as early childhood development and education programs, in terms of their health impacts and overall value. He also noted that he dislikes the term “return on investment” when applied to health care. “When you talk about return on investment, what you’re really are talking about is the return to society or to the individuals directly impacted.”

Price transparency in the health care system is also needed, added Teutsch. As an example of what is currently wrong with the system, he cited the benefits statement he gets that claims the drugs he received are worth $2,000, when in fact they cost $8 at his local pharmacy. Humphreys said she had being trying to think of places where technology has decreased the cost of health care and was not familiar with many, probably because cost is not transparent and so it is hard to judge whether technology has had an impact on cost. Wolf said that health care is still trying to figure out how to integrate technology into the system to provide cost transparency

Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
×

and to improve patient satisfaction and patient engagement. In particular, he remarked that all of the work being done to create patient portals and mobile apps for accessing electronic health records all assume patients want 24-hour access to their medical record. “We’ve never really worked with patients in designing these kinds of engagements or in thinking about how they would use them,” said Wolf.

With regard to a research agenda, Wolf said it is important to better understand what can be done from a health literacy perspective to better engage patients so that they can more effectively use various interventions and technologies. In particular, research is needed to better understand how to deal with an aging population that will need to have its sights recalibrated regarding how much interventional health care they really need compared to what they have come to expect. Many people, for example, still believe that generic drugs are inferior to the brand name equivalent. “How do we move forward with a health care system that is trying to provide evidence-based care, but is being perceived as pulling resources out to try to save money? I think that’s a very big health literacy challenge for us,” said Wolf.

Wong views this as an issue of cost relative to affordability given the constraints of the marketplace. “This is going to be a value proposition in terms of I put out X number of dollars for my family, and how much do I get back?” asked Wong. Health-literate organizations are likely to do better in that case because consumers are more likely to understand the services they receive for their health care dollars and better appreciate the value of those services relative to those provided by organizations that are not transparent and not health literate. Teutsch added that the ability to understand value comes from being an educated consumer, for which health literacy plays an obvious role.

Wilma Alvarado-Little, asked if it is really known how consumers want to get their health information. She recounted how reluctant she was to go from a physical book to an e-reader, and how her organization had created what it thought was a fantastic website only to have community members say they still wanted print information. Humphreys replied that there are two aspects to this question. First, there are people who are intrigued with what technology can do and are developing products and hoping that consumers will use them. Some of these products may encourage people to live a healthier lifestyle by feeding data into an EHR, which would be a good thing. Another way in which technology could be useful for providing information would be if it made it possible for an individual or his/her physician to compare a health profile to de-identified consolidated data from patients with the same profile. Those would be dream applications that may not be available for another 30 years, said Humphreys. What needs to happen in the meantime, she said, is for technology developers to rely less on their desires and to focus more on what consumers actually want.

Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
×

Wolf said, “We know quite a bit about how to make information better, we just don’t do it. We’re variable and have not done well at being consistent, and we either don’t have the stomach to follow through or we don’t have the accountability there to say that we’re putting out these standards and then have some sort of follow-up to ensure that people are following them.” He added that health systems could make better use of technology to push information out to consumers, and he cited a project that his staff suggested to study the utility of an application that makes his phone vibrate when he is supposed to take a medication. What’s needed to make such tools useful is to aggregate content and to actually ask consumers how they want that content delivered. “We just haven’t figured out how to disseminate information,” said Wolf.

Catina O’Leary commented that too often the people who control information that could be useful to patients do not want to share that information or consolidate it in a way that would benefit patients. She then asked if anyone on the panel had any thoughts about how to change the way people who have the power to make decisions about data access think about this problem. Wolf said that companies such as Microsoft and Google are trying to change the equation by developing applications that give patients ownership over their health information. Today, he added, pharmacists and physicians alike do not have a good idea on how to provide information using technology in ways that would be useful to them and their patients, and that this is in part a failure of the health literacy community to help providers know how to get information into the hands of those who need it.

Humphreys said that the issue of being able to exchange and integrate health data is one that has engaged her for some time. From that perspective the situation is a great deal better now than it was, and there are policies and laws in place that will improve the situation further over time. Consumers now understand that EHRs exist, and they want to know why their data have not become easier for them to access. This problem is now visible and people are working to address it. She believes, in fact, that this challenge will be solved in the next 5 to 10 years and individuals will have access to and will own their health data. As an example of the progress being made, she said the latest revision to the Clinical Laboratory Improvement Amendments and HIPAA make it clear that patients are entitled to get laboratory data, including entire genome data that may have been generated in the context of some specific diagnostic test.

Robert Logan, communications research scientist at NLM, remarked that there are some people in clinical informatics who argue that what is needed is not just information, but health information that patients and caregivers can use to help them make decisions. He asked the panel if they agreed that this was really the vital missing element and if so, would hav-

Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
×

ing that kind of information available create a new health equity problem because the information-rich will get richer and the information-poor will get poorer. Teutsch said the type of system Logan asked about is not on the horizon. Something as simple as being able to provide information about what standard evidence-based guidelines do exist and incorporate them into a clinical care system linked to the electronic medical record is a real challenge, not from a technical viewpoint but from an adoption viewpoint. He did think that at a minimum it should be possible to codify standard guidelines and make them available to both physicians at the point of care and to their patients. It would make sense, he said, for patients to be able to go online before their appointment and see what services are standard for their condition and then be able to talk to their physician about those services.

Humphreys said there are ways of doing that now, such as the system that enables a patient to click on a drug in their patient portal and access health-literate information, often from NLM, on that drug. The next step would be to have a system that could access a patient’s medical record and would push relevant information to the patient. This would require health literacy research to understand how to best deliver that information so that it would enable patients to make better decisions about their health and the treatments they receive. Even better, she said, would be a customized model for each patient that would provide evidence-based information that would help each patient live a healthier life. For example, a single mother’s model might provide information about what they could best do in a limited amount of time to improve their health, such as walk her child to the bus stop instead of driving the child.

For the final remarks of this session, Isham referred to Wong’s comment that the most important thing is to ask a patient what a good day means to him or her, which he said suggests that outcome is not health itself, but social function however it is defined by the patient. Given that, Isham wondered if the field is being too narcissistic in its conversations about health and health literacy and if the skills needed to be health literate might overlap with the skills needed to be financially literate or to be effective at a job or as a family member. “So what can we learn, what questions should we be asking as a field about what the overlaps are, what the common agendas might be that might either enable our agenda to be more effective, or that might cause us to learn from those other fields how we might be more effective in health literacy?” asked Isham. Wong replied that there is an aspect of being a health provider that should lead to considering how to best make a difference in people’s lives. “If the person says a good day to me is if I don’t have to go to bed hungry or to have a job interview, we need to be able to deal with that,” he explained. “Perhaps that is going to be as important to that individual as taking his/her statin to lower cholesterol.”

Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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Suggested Citation:"6 Looking to the Future." National Academies of Sciences, Engineering, and Medicine. 2015. Health Literacy: Past, Present, and Future: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21714.
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In 2004, the Institute of Medicine released Health Literacy: A Prescription to End Confusion, a report on the then-underappreciated challenge of enabling patients to comprehend their condition and treatment, to make the best decisions for their care, and to take the right medications at the right time in the intended dose. That report documented the problems, origins, and consequences of the fact that tens of millions of U.S. adults are unable to read complex texts, including many health-related materials, and it proposed possible solutions to those problems.

To commemorate the anniversary of the release of the 2004 health literacy report, the Institute of Medicine's Roundtable on Health Literacy convened a 1-day public workshop to assess the progress made in the field of health literacy over the past decade, the current state of the field, and the future of health literacy at the local, national, and international levels. Health Literacy: Past, Present, and Future summarizes the presentation and discussion of the workshop.

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