This initiative's goal is to conduct applied research in the area of patient/public understanding of health and science. Our research focuses on better understanding the mechanisms of health and environmental literacy, and creating innovative interventions and programs to advance patient/public health literacy and health.
The initiative is lead by Christina Zarcadoolas, PhD, a sociolinguist, and a a highly interdisciplinary team of researchers and practitioners including physicians, health educators, social scientists, human factors, and informatics experts.
Our activities include:
- Conducting research to design and evaluate public education and research translation activities
- Engaging in collaborative partnerships with communities to advance the public's health and environmental literacy, increase healthy behaviors and mitigate risks in the built and natural environments.
- Develop policy recommendations that will increase our ability to socially and politically address health and environmental issues in urban settings.
- Conduct training workshops on health and environmental literacy issues for a range of audiences.
- Health Literacy of Chronic Diseases
- Health Literacy and Health Disparities
- Patient Safety
- Emergency Preparedness Communication
- E-Health and Health Literacy of Consumers
Overview of Health Literacy
A silent killer maneuvers just below the surface of almost all the health issues that will lead to death and disease in the 21st century. The U.S. population faces well-recognized health risks including chronic diseases, environmental degradation, and natural and man-made disasters, but the silent killer is less diagnosed and remains essentially untreated. The silent killer is low health literacy - the reality that almost half of adults in the U.S., over 90 million people, struggle to find, understand, and correctly use health information. Therefore, low health literacy is one of the most unheralded, yet critical threats to public health. An expanded understanding of health literacy is necessary in order to be able to narrow the gap between expert and lay knowledge and advance the health literacy of the population. A more health literate public will be able to understand and make informed decisions regarding preventive health, chronic disease treatment, as well as complex emergencies.
Health Literacy Defined
Health literacy refers to the wide range of skills, and competencies that people develop over their lifetimes to seek out, comprehend, evaluate, and use health information and concepts to make informed choices, reduce health risks, and increase quality of life. Health literacy, like any competency, is on a continuum. And while a person's abilities to read play a role, reading ability alone is insufficient to characterize a person's health literacy.
A health literate person is able to use health concepts and information generatively - applying information to novel situations. A health literate person is able to participate in the ongoing public and private dialogues about health, medicine, scientific knowledge, and cultural beliefs. Health literacy evolves over one's life and, like most complex human competencies, is impacted by health status as well as demographic, sociopolitical, psychosocial, and cultural factors (Zarcadoolas, Pleasant & Greer, 2004, 2006).
Health literacy serves both personal and societal functions. Health literacy is as much a public health issue as it is the challenge of individual patients. As a society, we are awash with health messages - most too complicated, many often misleading. We receive health information from many sources - doctors, family and friends, TV, newspapers, magazines, and the internet. Direct-to-consumer marketing by the pharmaceutical industry as well as on-line purchase of medications has created a climate in which the consumer is more and more able to ask for and receive commercially marketed products. The imperatives of emergency preparedness and disaster response have made the perils of low health literacy more apparent.
Our definition of health literacy is the foundation for a multi-dimensional model, ecological model where four central domains play key roles:
- fundamental literacy
- scientific literacy
- civic literacy
- cultural literacy
Literacy skill in one domain can contribute to developing literacy skill in another domain, and competencies in one area can compensate for a lack of competencies in another.
Fundamental literacy includes: Reading, writing, speaking, and numeracy - the ability to read, write, speak, and work with numbers. Fundamental literacy is a keystone of health literacy for a number of reasons. Reading, writing, speaking and computing are fundamental ways people develop skills, acquire information and conduct daily life. Written and spoken health information is full of complex language (vocabulary and syntax).
Science literacy includes: knowledge of fundamental scientific concepts, ability to comprehend technical complexity, an understanding of technology, and an understanding of scientific uncertainty and that rapid change in the accepted science is possible.
Civic literacy refers to skills and abilities that enable citizens to become aware of public issues, to participate in critical dialogue about them, and to become involved in decision-making processes. We include: media literacy skills, knowledge of civic and governmental systems and processes, knowledge of power, inequity and other hierarchical relationships, and knowledge that personal behaviors and choices affect others in a larger community and society.
Cultural literacy refers to abilities to recognize, understand and use the collective beliefs, customs, world-view, and social identity of diverse individuals to interpret and act on information. Cultural literacy should be bilateral, in that the communicator (doctor, scientist, public health official) should understand aspects of the culture of the recipient (interlocutor), and the recipient, in turn, should understand aspects of the professional culture of the sender.
For public health professionals, health educators and communicator, one of the important implications of this expanded model of health literacy is that we have greater flexibility in the resources we can use to create effective health messages, promotions, and campaigns.
There is little capacity for people to be healthy and for the planet to be healthy, little capacity for equity, without good, effective communication. In short, there is no civil society without it. Advancing health literacy is a goal we should all be working towards.
Zarcadoolas, C., Pleasant, A. & Greer, D.S. (2006) Advancing Health Literacy: A Framework for Understanding and Action. San Francisco, CA: Jossey-Bass.
Zarcadoolas, C., Pleasant, A., & D. Greer. (2005). Understanding health literacy: An expanded model. Health Promotion International. 20:195-203.
(2008) Advancing Health Literacy through Human Papilloma Virus (HPV) Education
Christina Zarcadoolas, PhD, Lisa L. Littman, MD, MPH, Andrea Rothenberg, MS, LCSW, Adam Jacobs, MD, Sarah Rubinstein, MPH, CHES, Rennie Gallo, Mari Umpierre, PhD, Rhoda Sperling, MD.
Icahn School of Medicine
There is compelling evidence that patients' health literacy is an important indicator of informed decision making and action (Schillinger, 2004; Schillinger, 2002; Williams, et al., 1998; Zarcadoolas et al., 2006). Far too often those with the greatest health burdens have limited access to understandable and actionable health information. Patient information about Human Papilloma Virus (HPV) is often written at reading and health literacy levels beyond those of many under-educated and ethnic minority populations. A multidisciplinary research team at the Icahn School of Medicine in New York City, lead by health literacy expert, Christina Zarcadoolas, PhD, is conducting a 1 year research and development project to produce an interactive web-based patient education tool about HPV and the HPV vaccine matched to the health literacy needs of under-educated young women. The target population is adult women aged 18-26 who are low-medium income, low-educated, low-literate and minority urban dwellers. Research methods consist of focus groups and usability testing. The goal of this pilot research is to provide useable, actionable information on HPV for patients. This research project is being funded by the United Hospital Fund.
(2008) Health Literacy Load Analysis of Personal Health Records
Dr. Zarcadoolas is working with a team of social scientists and technology experts to empirically study the “health literacy load” (demands on the user) of electronic personal health records and tailor their design for underserved populations. Zarcadoolas is working with The Institute for Family Health (IFH), a network of 16 primary care providers in underserved neighborhoods in Manhattan, the Bronx, and the Hudson Valley. Ongoing development activities include: literacy load analysis, patient focus groups and surveys, patient computer access and literacy, and development of a program strategy for patient education and training in use of the application.
(2007& 2008) Developing Medical Detailing Kits for NYC DOHMH
Consulting to the NYC Department of Health and Mental Hygiene to create Detailing Action Kits for the Public Health Detailing Program. These provider and patient materials are informed by health literacy principles and empirically field tested and evaluated.
Example: The Obesity Detailing Kit
(2007) How usable are current GIS maps?: communicating emergency preparedness to vulnerable populations
Despite the growing popularity of Geographic Information System (GIS) information maps as tools in public health and emergency preparedness, there is little known about the ability of inner city residents to read and use GIS information. Using a GIS map from New York City's Office of Emergency Management Storm Surge Report, researchers sought to determine if residents could use the map to identify whether or not they lived in a hurricane evacuation zone, and locate where the nearest evacuation center was. Researchers conducted 178 interviews with adult residents of East and Central Harlem (134 English-speaking, 44 Spanish-speaking), randomly selected and interviewed at various locations. Findings reveal that a majority of less educated adults (those not completing high school) could not read and use the maps for basic and vital information. Forty percent (40%) of those who had not graduated high school could not find where they lived on the map, and 83% could not correctly identify what hurricane evacuation zone they lived in. Conversely, those who had completed high school were 9.4 times as likely to be able to correctly identify their zone. Eighty three percent (83%) of those with a lower education did not know how to get to the evacuation center closest to their home. Given the high rates of under-education in urban centers the researchers conclude there is a real and dangerous gap between the language and design of GIS and the abilities of millions of adults to interpret and use this information a currently presented. Implications for redesign and revising language are being developed.
Zarcadoolas,C., J. Boyer, A.Krishnaswami, & A. Rothenberg. (2007). “How usable are current GIS maps: communicating emergency preparedness to vulnerable populations?” Journal of Homeland Security and Emergency Management.