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Name of Submitter:
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Sheila Murphy
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Title of proposed idea:
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Addressing the Elephant in the Room: Identifying and overcoming health literacy-related barriers to informed health decision-making
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What is the major obstacle/challenge in the biomedical research field? What is needed to overcome this obstacle/challenge?
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The pace and complexity of medical discoveries are both expanding exponentially.
But the capacity of the general public to comprehend and provide informed consent to these potentially life-saving medical innovations lags far behind. As a result, there is a rapidly widening knowledge gap between those who develop and prescribe state-of-the-art prevention, intervention and treatment programs and the end user. The general public’s failure to understand even relatively simple scientific concepts such as a “gene by environment interaction” or mathematical concepts related to dosage can negatively impact both the adoption of and adherence to prevention and treatment recommendations and ultimately undermines the nation’s health. This knowledge gap is disproportionately worse for racial and ethnic minorities, individuals from low socioeconomic strata and those for whom English is a second language. Thus, the focus of this “big idea” is how to effectively address “an issue so pervasive it's often referred to as "the elephant" by those most closely involved — health literacy” (Wagner, NIH Record, 2003).
Health literacy is defined as “the capacity to obtain, communicate, process and understand basic health information and services to make appropriate health decisions” (Patient Protection and Affordable Care Act of 2010). With respect to the current level of health literacy in the United States, the assessment is grim. “Alarmingly, these skills and strategies are absent in more than half of the U.S. population. This fact is more disturbing when one considers that these are the very skills and strategies that often lead to longer life, improved quality of life, reduction of both chronic disease and health disparities, as well as cost savings. Low health literacy is estimated to cost $106-$236 billion annually” (Clear Communication: An NIH Literacy Initiative, 2012).
The 2010 Healthy People report viewed the issue of health literacy as fundamental to reducing health disparities. But having identified a crucial problem, the report went on to suggest potential solutions that were ambitious but somewhat underdeveloped. For example, recommendations include 1.) Improve the reading skills of persons with limited literacy and 2.) Develop appropriate written materials for audiences with limited literacy.
While the goals set forth for Healthy People 2020 do suggest replacing the traditional print publication with an interactive website as the main vehicle for dissemination, websites also require a degree of literacy and sophistication often lacking in low health literacy populations. Moreover, with a few exceptions, the redesigned website (www.healthypeople.gov) does not “replace traditional print publications” — it merely moves the largely text-based content onto the web. Relying heavily on written materials to improve health literacy is problematic. Why not use other, potentially more effective, channels of communication? For instance, video not only bypasses the problem of low reading level but can also incorporate visual elements to aid comprehension. MedlinePlus (http://www.nlm.nih.gov/medlineplus/tutorial.html) does offer disease-specific modules with some animation for patients but the content is geared toward a relatively well-educated audience. What is currently being proposed would focus less on specific diseases and more on general, overarching medical, scientific or mathematical concepts necessary for making informed health decisions such as the importance of knowing your family’s medical history, the basics of genetics, the need for a control group in clinical trials, why taking antibiotics too often can be dangerous, the importance of having all 3 shots of the HPV vaccine, the concept of risk factors, potential drug interactions, how vaccines work, what are stem cells and why are they important?, what is “tailored” medicine? etc.
In addition, the Healthy People recommendations focus more on format than on identifying precisely what information needs to be conveyed. Why not proactively determine the health concepts that patients have the most difficultly comprehending and develop materials relevant to those key areas of confusion?
And finally while these are certainly admirable goals, it is unclear who will be responsible for their implementation. Physicians? A recent National Ambulatory Care Survey found that the average time that a doctor spends with a patient is 13 minutes – hardly enough to diagnose their ailment never mind teaching the remedial reading, science and math required to fully comprehend various prevention and treatment options. Furthermore, research by Schillinger and colleagues (2003) points out that patients typically recall less than half the information conveyed during an outpatient visit. This may be due to low literacy but it could also be that patients are often physically ill or at least ill at ease during doctor visits. Pain, fear, anxiety and time pressure combine to make the doctor visit one of the worst possible times to impart crucial information. What if we didn’t wait until an individual is ill to launch into a lecture on genetics? What if we exposed the public to key medical concepts early and often throughout the lifespan?
A systemic problem calls for a well-orchestrated systemic solution. Below are just a few ideas to address the challenges identified above:
➢ Provide online access to visual aids and modules to aid doctors and other health care practitioners in communicating the most confusing health-related concepts. These could be kept on a central server so that the library could be continually updated and expanded. This would also keep dissemination costs relatively low. Modules could be accessed not only during the clinic visit but also at the pharmacy when a prescription is filled, at home with family members via computer or smartphone, etc.
➢ Provide training and encourage schools to use age-appropriate health literacy materials, modules and science, math and health literacy competitions at all educational levels. (Perhaps culminating with a Health Literacy Certification).
➢ Take a multilevel approach by involving individuals, interpersonal networks such as friend, families, and co-workers, and communities (including local government, community organizations and churches) in the dissemination of crucial health prevention and treatment information. (For more on this topic see response to Question 2 below).
➢ Identify local, state and federal government agencies (such as the CDC, NIH, the Dept. of Education, the FCC and others who may be working on related issues and co-ordinate efforts to avoid redundancy and leverage existing resources.
➢ Partner with existing nongovernmental entities. For example, Hollywood, Health & Society (HH&S) is a CDC funded program at the USC Annenberg Norman Lear Center that provides entertainment industry professionals with accurate and timely information for televised health storylines. Popular primetime television shows reach approximately 20 million on first viewing and up to 600 million in worldwide syndication. Or, in addition to noting where Aunt Bertha lived and her occupation, a website-based company such as ancestory.com could add crucial health information about Aunt Bertha to the family tree (What did she die of? Did she have diabetes?). |
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What emerging scientific opportunity is ripe for investment by the Common Fund?
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A. The use of narrative to convey health-related information. Humans are innate storytellers. The power and perseverance of a narrative or story structure has been recognized and utilized for thousands of years. Yet when it comes time to craft health messages designed to convey crucial, potentially life saving health information, Western medicine all but ignores the use of narrative. Rather this vital information is typically presented in a written list of risk factors, recommended prevention steps, symptoms, and treatment options. As part of an ongoing NIH-funded TRO1 (R01CA144052 - Murphy/Baezconde-Garbanati) designed to empirically test whether utilizing a narrative format might produce greater and longer lasting impact on knowledge, attitudes and prevention behavior compared to a non-narrative format, two 11-minute films containing the same 18 facts regarding cervical cancer prevention, detection and treatment were produced. The Tamale Lesson conveys facts regarding the cause of cervical cancer, as well as how to prevent it (via the HPV vaccine) and detect it (via Pap tests) using the Romeo family’s preparation for their youngest daughter’s Quinceañera or 15th birthday as the narrative vehicle. The non-narrative film, It’s Time, contains the same facts but uses a more traditional approach featuring doctors, patients, facts and figures. The relative efficacy of these two films is currently being tested by first surveying 1000 women (300 European American, 300 Mexican American, 300 African American and 100 Korean American) to establish a pretest baseline level of cervical cancer-related knowledge, attitudes and behavior, randomly assigning the same women to receive either the narrative or non-narrative film and then resurveying them 2 weeks and then 6 months later. Preliminary analysis comparing participants’ baseline responses to those collected 2 weeks after having viewed their randomly assigned film suggests that the narrative format produced a more positive attitude toward Pap tests and greater behavioral intent to be screened. These results as well as other studies indicate that narratives may be one way to convey health-related content in an interesting and nonthreatening format to increase the nation’s health literacy.
B. Taking a multilevel approach to identifying and overcoming barriers to health.
Current models of health communication recognize that individuals do not operate in a vacuum but rather our lives are inextricably intertwined with our family, friends and community. This philosophy fits well with Healthy People 2020’s renewed focus on reducing health disparities using a social determinants of health approach as noted in the following quote: “Health status and health behaviors are determined by influences at multiple levels, including personal (i.e., biological, psychological), organizational/institutional, environmental (i.e., both social and physical), and policy levels. Because significant and dynamic inter-relationships exist among these different levels of health determinants, interventions are most likely to be effective when they address determinants at all levels. Historically, many initiatives have focused on individual-level health determinants and interventions. Healthy People 2020 therefore expanded its focus from previous iterations to emphasize tracking and monitoring of health-enhancing social and physical environments. Integrating prevention into the continuum of education — from the earliest ages on — is an integral part of this ecological and determinants approach.”
One example of just such a multilevel research effort is an NIH-funded study Barriers to Cervical Cancer Prevention in Hispanic Women: A Multilevel Approach (Award Number R01 CA155326) that identifies the barriers and conduits to cervical cancer prevention, detection, and treatment among Hispanic women. This goal is being achieved through quantitative surveys of 2,000 Hispanic women between the ages of 21-50 who will receive cervical cancer screening at LA County-USC Women’s Clinic in East Los Angeles. An innovative aspect of the study is that it takes a more ecologically valid approach by extending the traditional individual-level determinants of health model to incorporate interpersonal networks and community-level factors as predictors of cervical cancer-related beliefs, knowledge, and behavior. A similar multilevel approach could be used to identify key resources and barriers to health literacy. |
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What are the potential Common Fund investments that could accelerate scientific progress in this field?
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The Common Fund could identify medical, scientific or mathematical concepts whose comprehension is crucial to making informed health decisions. Initially, the focus should be on a handful of confusing concepts whose clarification would provide the greatest benefit for the largest proportion of the population or the most vulnerable segments of the population. For example, one early objective could be to increase public awareness of the role genetics play in health. Clarifying this concept could lead to a better understanding of why health-care providers ask whether various diseases run in the family. This improved understanding, in turn, could lead to not only more accurate retrospective reporting of family medical history but also lead the public to pay greater attention to patterns of disease going forward, allowing earlier diagnosis and perhaps even prevention. |
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If a Common Fund program on this topic achieved its objectives, what would be the impact?
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Increasing the public’s health literacy and comfort level with respect to essential but confusing health-related concepts should reduce the knowledge gap between healthcare providers and patients, reduce health disparities, and lead to a more informed and healthier nation. |
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