Health Literacy, e-Health and Sustainable Development
WHEC Practice Bulletin and Clinical Management Guidelines for healthcare providers. Educational grant provided by Women's Health and Education Center (WHEC).
Health literacy has been defined as the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health. Healthcare providers often face challenges when catering to the needs of the communities they serve. One of the important barriers which need to be addressed is the lack of compliance due to low levels of healthcare literacy worldwide. As a health care provider, public health practitioner and health educator working with global communities, it is our observation certain groups of populations, such as women, those living in rural areas and immigrants are vulnerable to serious health disparities. Unfortunately, they experience significantly worse health outcomes such as higher rates of morbidity and mortality due to lack of health literacy levels. Some of the health risks faced by these groups include a higher incidence of cancer, diabetes, high blood pressure and HIV/AIDS. These health risks demand effective communication between the providers and the target population -- to help them recognize, minimize and respond effectively and in a timely fashion to potential health problems. Health literacy goes beyond a narrow concept of health education and individual behavior-oriented communication, and addresses the environmental, political and social factors that determine health. Health education in this more comprehensive understanding aims to influence not only individual lifestyle decisions, but also raises awareness of the determinants of health, and encourages individual and collective actions which may lead to a modification of these determinants. Health education is achieved therefore, through methods that go beyond information diffusion and entail interaction, participation and critical analysis. Such health education leads to health literacy, leading to personal and social benefit, such as by enabling effective community action, and by contributing to the development of social capital. Health is both a fundamental human right and a sound social investment. Governments need to invest resources in healthy public policy and health promotion in order to raise the health status of all their citizens. Health promotion is the process of enabling people to increase control over, and to improve, their health. A basic principle of social justice is to ensure that people have access to the essentials for a healthy and satisfying life. At the same time, this raises overall societal productivity in both social and economic terms. Healthy public policy in the short term will lead to long-term economic benefits. New efforts must be made to link economic, social, and health policies into integrated action.
The purpose of this document is to discuss the importance of incorporating health literacy into educational programs of healthcare providers. The lack of education and literacy among women and children in manifold is causing a direct and indirect impact on their sense of empowerment, low socio-economic status, healthcare and ultimately poor health. Health literacy and e-Health are valuable tools in empowering women and communities to improve their health status, achieve sustainable development and attain Millennium Development Goals (MDGs). The Women's Health and Education Center's (WHEC's) strategy on e-Health focuses on strengthening health systems in countries; fostering public-private partnerships in information and communication technologies (ICT) research and development for health; supporting capacity building for e-Health application worldwide; and the development and use of norms and standards. Success in these areas is predicted on a fifth strategic direction: investigating, documenting, analyzing the impact of e-Health, and promoting better understanding by disseminating information.
Literacy is a human right and can be considered a tool of personal empowerment: a means for social and human development. Educational opportunities depend on literacy. Thus, literacy is essential for eradicating poverty, improving the socio-economic status of communities, reducing child and maternal mortality rates, curbing population growth, achieving gender equality and promoting sustainable development at local, regional and national levels. According to a report released by the United Nations Educational, Scientific and Cultural Institution (UNESCO) in 2007, the countries of South and South-West Asia have the highest number of illiterate adults in the world: an estimated 388 million. While literacy rates in Central Asia are not as high, the gender gap is of concern, as 72.5% of the illiterate population are women (1).
Health literacy and the pivotal role it plays have been defined by the World Health Organization (WHO) as follows (2): "Health literacy implies the achievement of a level of knowledge, personal skills and community health by changing personal lifestyles and living conditions. Thus, health literacy means more than being able to read pamphlets and make appointments. By improving people's access to health information, and their capacity to use it effectively, health literacy is critical to empowerment. Health literacy is itself dependent upon more general levels of literacy. Poor literacy can affect people's health directly by limiting their personal, social and cultural development, as well as hindering the development of health literacy." Low health literacy may also have negative psychological effects. One study found that those with limited health literacy skills reported a sense of shame about their skill level (4). As a result, they may hide reading or vocabulary difficulties to maintain their dignity.
Every day, patients encounter the challenges of interpreting health information presented by healthcare providers and making decisions based on their understanding of that information. Health literacy relates to the individual's capacity to obtain, interpret, and understand health information and healthcare services in ways that are health enhancing. The problem of limited health literacy is widespread. Whereas approximately 10% of Americans have low general literacy (skills necessary to perform simple and everyday literacy activities), 50% of adults are estimated to have marginal to low health literacy skills (6). Persons with limited health literacy skills make greater use of services designed to treat complications of disease and less use of services designed to prevent complications (3). Studies demonstrate a higher rate of hospitalization and use of emergency services among patients with limited health literacy skills. This higher use is associated with higher healthcare costs (4). Sustained health promotion requires institutionalizing it. This means ensuring that health promotion is integrated into the building blocks of financial and human resource planning, knowledge management, partnership building, and capacity for effective implementation. This process requires leadership that understands the interconnectedness of causes, can strike strategic relationships across sectors, can advocate and mobilize sustained financing and catalyze systemic change in health related policies and infrastructure needed to be built. It entails having wide knowledge complemented by a repertoire of personal attributes. There is strong need to build leadership capacity to lead the process of institutionalizing health promotion. Countries differ widely in their capacity for health promotion and this needs to be addressed in most developing countries. Identifying competencies, developing curriculum and strengthening capacity for training for health promotion leadership in countries are an urgent need. It involves generation of innovative ideas on sustainable financing for health promotion such as allocation of a percentage of taxation on tobacco and alcohol for the creation of a health promotion foundation.
Definition of Concepts:
- "Health Promotion" is a process of enabling people to increase control over their health and its determinants, and thereby improve their health.
- "Health Education" is a process comprising of consciously constructed opportunities for learning and communication designed to improve health information, health literacy, health knowledge and developing life skills which are conducive to the promotion of an individual and community's health including that of the environment.
- "Social Responsibility for Health" is translated in the decisions and actions of the decision-makers in both public and private sector to pursue policies and practices which promote and protect health. Social responsibilities for health is lacking when policies and practices pursued by the private and public sectors are of the kind that harm the individuals, families, communities and the environment.
- "Empowerment of Individuals, Families and Communities" is a process through which people gain greater control over decisions and actions affecting their health.
- "Enabling Individuals, Families and Communities" is to take action in partnership with individual groups, families or communities to empower them. It fosters sustainability of health promotion in the community.
Health promotion is guided by the following principles (5):
- Health as a fundamental human right and sound social investment;
- Equity and social justice in health promotion;
- Social responsibility of the public and private sectors in promoting health;
- Partnerships, networking and alliance building for health;
- Individual and community participation as a pre-requisite;
- The individual has a social responsibility over their own health;
- Empowerment of the individual and communities for health promotion;
- Development of infrastructure for health promotion;
- Integration of health promotion activities across sectors;
- Professional ethics and standards.
Understanding Health Literacy:
Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (6). Health literacy is dependent on individual and systemic factors:
- Communication skills of lay persons and professionals;
- Lay and professional knowledge of health topics;
- Demands of the healthcare and public health systems;
- Demands of the situation/context.
Health literacy affects people's ability to:
- Navigate the healthcare system, including filling out complex forms and locating providers and services;
- Share personal information, such as health history, with providers;
- Engage in self-care and chronic-disease management;
- Understand mathematical concepts such as probability and risk;
- Health literacy includes numeracy skills. For example, calculating cholesterol and blood sugar levels, measuring medications, and understanding nutrition labels all require math skills;
- Choosing between health plans or comparing prescription drug coverage requires calculating premiums, co-pays, and deductibles.
In addition to basic literacy skills, health literacy requires knowledge of health topics. People with limited health literacy often lack knowledge or have misinformation about the body as well as the nature and causes of disease. Without this knowledge, they may not understand the relationship between lifestyle factors such as diet and exercise and various health outcomes. Health information can overwhelm even persons with advanced literacy skills. Medical science progresses rapidly. What people may have learned about health or biology during their school years often becomes outdated or forgotten, or it is incomplete. Moreover, health information provided in a stressful or unfamiliar situation is unlikely to be retained.n
Culture affects how people communicate, understand, and respond to health information. Cultural and linguistic competency of health professionals can contribute to health literacy. Cultural competence is the ability of health organizations and practitioners to recognize the cultural beliefs, values, attitudes, traditions, language preferences, and health practices of diverse populations and to apply that knowledge to produce a positive health outcome. Competency includes communicating in a manner that is linguistically and culturally appropriate (7). Healthcare professionals have their own culture and language. Many adopt the "culture of medicine" and the language of their specialty as a result of their training and work environment. This can affect how health professionals communicate with the public. For many individuals with limited English proficiency (LEP), the inability to communicate in English is the primary barrier to accessing health information and services. Health information for people with LEP needs to be communicated plainly in their primary language, using words and examples that make the information understandable.
Overview of e-Health:
e-Health is the use of information and communication technologies (ICT) for health to, for example, treat patients, pursue research, educate students, track diseases and monitor public health. There is great enthusiasm over the use of emerging interactive health information technologies-often referred to as e-Health, and the potential these technologies have to improve the quality, capacity, and efficiency of the health care system. However, many doctors, advocacy groups, policy makers and consumers are concerned that electronic health systems might help individuals and communities with greater resources while leaving behind those with limited access to technology. Many observers believe that the use of emerging interactive health information technologies, often referred to as e-Health, can help to improve the quality, capacity, and efficiency of the health care system (8). e-Health has the potential to improve access to the health care system for traditionally underserved populations and to increase the capacity to provide tailoring and customization for individual patients and consumers. e-Health systems can also improve clinical decision making and adherence to clinical guidelines; provide reminder systems for patients and clinicians, thereby improving compliance with preventive service protocols; provide more immediate access to laboratory and radiology results; and, when integrated with clinical decision support systems, help to prevent many errors and adverse events (Institute Of Medicine [IOM], 2003). While e-Health has many potential benefits, some observers have expressed concern that these systems could increase health care disparities by helping mainly those individuals and communities with greater resources. Recent reports show that health care disparities do exist between advantaged and underserved populations (IOM, 2002). Underserved populations generally include ethnic minorities, people in lower socio-economic status. Implementation of e-Health and health information technologies is seen by many observers as an effective way to address current concerns about the quality and safety of the U.S. health care system (9). Among those concerns are the facts that U.S. adults receive only about half of recommended health care services, that less than 50 percent of adults receive the preventive and screening tests called for in guidelines for their age and sex (Commonwealth Fund, 2006), that preventable medical errors in hospitals result in around 100,000 deaths per year (IOM, 2000), and that there are 1.5 million preventable adverse drug events each year (IOM, 2007). The rising costs of health care are another major concern that e-Health may help address. By 2016, health care spending in the United States is expected to increase from the current 16 percent of the gross domestic product. There is an ongoing project devoted to determining definitions of various concepts in e-Health and information technology and information technology; however, for purposes of this discussion the following definition applies: e-Health involves simplifying and handling processes relating to information, communication and transactions within and between health care institutions and professionals by utilizing information and telecommunication technologies.
Building e-Health Foundations:
e-Health is a global phenomenon. One of the guiding principles in advancing e-Health agenda worldwide is fostering collaboration with international and nongovernmental organizations (NGOs), the private sector and other key stakeholders. Given the increasing need for qualified health professionals and the limited human resources available for training students, both developed and developing countries are urged to integrate e-learning methods into student education where appropriate. In January 2006 the World Health Organization (WHO) Executive Board endorsed a set of priority action areas in e-Health (10). WHO has been an active participant in the World Summit of the Information Society (WSIS), and subsequently, the United Nations Group on the Information Society, an interagency group created to carry out the summit's recommendations. The WSIS has had significant success in developing momentum and raising awareness among governments of their role in building and promoting equitable information societies through the deployment of ICT across all sectors. Much has already been achieved by countries in their ambitions to introduce the power and benefits of ICT into their health systems and services. Every indication points to the fact that Member States are eager to proceed along this path. The experiences of the more advanced countries can provide useful insights into best practices, as well as the likely challenges that countries with less experience will face along the way. These challenges are numerous. Developed and developing countries are not just grappling with funding issues, growing infrastructural requirements or striving towards interoperability of systems; they are also often struggling with the need to change entrenched attitudes regarding technology -- often in the health work force itself, among other challenges. Proceeding in a way that not only strengthens capacity, but also preserves cultural integrity and increases the access to such technologies for those who need it most must remain a goal. It is the poor and marginalized in our societies that have the most to gain from advances in health care and e-Health; sadly they are often the groups who benefit the least.
Over the last decade, the need to develop and organize new ways of providing efficient health-care services has been accompanied by major advances in information and communications technology (ICT). This has resulted in a dramatic increase in the use of ICT applications in health care, collectively known as e-Health. e-Health is the use, in the health sector, of digital data -- transmitted, stored and retrieved electronically, in support of health care, both at the local site and at a distance. Today the integration and assimilation of e-Health into the everyday life of health-care workers is becoming a reality in developing as well as developed countries. The question is been whether activities in e-Health would divert precious resources away from basic needs in poor countries in want of everything (11). Clearly this is an important issue that should not be neglected. But it is also a fact that the world is being digitalized. The rich world as well as the poor world. The question is whether activities in e-Health might divert precious resources away from programs to meet basic needs in less affluent countries. Clearly this is an important issue that should not be neglected. But it is also a fact that the world is being digitalized. Many types of basic equipment that are fundamental to health care are now available only in digitalized form. When they make their way to developing world, these countries become digitalized. While computers are not available in all primary health-care centers in developing countries, they are now in use in an increasing number of centers. What are perhaps not so widely available are the connections, the networks that make communication between the different pieces of equipment and health-care personnel possible. When they become established, however, they offer tremendous potential for taking teachers and training material effectively to rural districts in developing countries for example through e-learning solutions. They also provide the potential for taking clinical specialists to the primary health-care setting through, for example, teleconferences. The question is thus not whether e-Health should be a possibility for developing countries. It already is. The main challenge is ensure that these options are used optimally and in a coordinated manner to achieve the desired effects and avoid resources being diverted from meeting basic needs.n
GOVERNMENT COMMITMENT IS NECESSARY
Long-term government commitment, based on a strategic plan, is a prerequisite for the successful implementation of e-Health activities (12). This commitment, which should be secured and sustained during all stages of the life-cycle of a project, may be in the form of:
- A long-term plan that is binding on all parties at all times;
- Sustainable finance;
- Support for pilot schemes and their conversion to regular programs as soon as they prove successful;
- Involvement of health authorities at national, provincial and district levels.
The availability of reliable, consistent and timely data is a prerequisite for an effective needs assessment and to assist countries in developing systems for the management of data on diseases, resources, the health situation and trends. ICT should be fully utilized in a needs assessment as it is the starting point for any other e-Health applications. Countries should make use of the experience of other countries without simply adopting the same model. A blanket, "one-size-fits-all" solution is not recommended because of the great variations in needs, infrastructure and resources within regions and countries. Lack of information technology skills and the low penetration rate of ICT in health-care institutions are limiting factors in the implementation of e-Health (13). Countries should develop plans and include ICT in their list of priorities to ensure that:
- All health-care professionals (including general practitioners, nurses and technicians) have access to computer systems and networks to facilitate their everyday work. Priority should be given to primary health-care centers since connections between doctors and major hospitals are important, especially in rural areas;
- All health-care professionals have access to basic ICT training facilities to improve their skills and foster positive attitudes towards information technology;
- Simple computer-based health applications are gradually introduced in health-care facilities, such as patient registry, case counting, drug listing and personnel administration.
- The security of e-Health systems must be assured, using modern technologies. This requires the assessment, development and maintenance of the credibility, accountability, quality, safety, confidentiality, integrity, availability and privacy of services, information and resources.
Community Empowerment and Sustainable Development:
Community empowerment refers to the process of enabling communities to increase control over their lives. "Communities" are groups of people that may or may not be spatially connected, but who share common interests, concerns or identities. These communities could be local, national or international, with specific or broad interests. 'Empowerment' refers to the process by which people gain control over the factors and decisions that shape their lives. It is the process by which they increase their assets and attributes and build capacities to gain access, partners, networks and/or a voice, in order to gain control. "Enabling" implies that people cannot "be empowered" by others; they can only empower themselves by acquiring more of power's different forms. It assumes that people are their own assets, and the role of the external agent is to catalyze, facilitate or "accompany" the community in acquiring power. Community empowerment, therefore, is more than the involvement, participation or engagement of communities. It implies community ownership and action that explicitly aims at social and political change. Community empowerment is a process of re-negotiating power in order to gain more control. It recognizes that if some people are going to be empowered, then others will be sharing their existing power and giving some of it up. Power is a central concept in community empowerment and health promotion invariably operates within the arena of a power struggle. Community empowerment necessarily addresses the social, cultural, political and economic determinants that underpin health, and seeks to build partnerships with other sectors in finding solutions (14). Globalization adds another dimension to the process of community empowerment. In today's world, the local and global are inextricably linked. Action on one cannot ignore the influence of or impact on the other. Community empowerment recognizes and strategically acts upon this inter-linkage and ensures that power is shared at both local and global levels. Communication plays a vital role in ensuring community empowerment. Participatory approaches in communication that encourage discussion and debate result in increased knowledge and awareness, and a higher level of critical thinking. Critical thinking enables communities to understand the interplay of forces operating on their lives, and helps them take their own decisions.
Our current healthcare delivery system assumes a high level of health literacy. Individuals are expected to understand and apply verbal information, including diagnosis, medical advice, and treatment; have access to and use a computer and the Internet; calculate and interpret numerical data; and interpret graphs and visual information. Patients are expected to be articulate and accurate about their conditions and symptoms, as well as to have sophisticated decision-making skills. Often those individuals with greatest health needs have limited skills to synthesize and interpret health information (15). In the United States, people aged 65 and older consume 30% of prescriptions and 40% of over-the-counter drugs (15). Senior citizens often have low literacy skills, and therefore poor comprehension of information of information on medication labels. Low health literacy also may be a problem for immigrant populations for whom English is a second language. According to a recent American College of Obstetricians and Gynecologists (ACOG) project focusing on language access solutions in California, 25% of ACOG Fellows reported that one quarter of their patients have limited English proficiency (LED) and 38% reported an increase in patients with LED during the past years (15). Keep the messages simple and limit the number of messages (general guideline is four main messages). Focus on action and give specific recommendations based on behavior rather than the medical principle.
Community Empowerment in Action: Self-Employed Women's Association (SEWA):
SEWA is a trade union of nearly a million self-employed women in Gujarat, India. Like most self-employed vegetable vendors, cart pullers, embroidery workers, these women would live in poor conditions and practice their trade in vulnerable conditions. Frequently harassed by local authorities, with no insurance or other social security and forced to take loans at exploitative rates, these women got organized to increase control over their lives. Vegetable sellers and growers linked together to start their own vegetable shop, cutting out the exploitative middle man, to mutual gain. SEWA women started their own bank, and solved the problem of access to credit, avoiding the huge interest rates demanded by private loan agents. Collectively organized health insurance is used to pay for health costs, which earlier used to drive them further into poverty. SEWA women also organize child-care, running centers for infants and young children, and campaign with state and national level authorities for healthcare services and child care as an entitlement for all women workers.
Recommendations to Improve and Promote Health Literacy:
Responsibility for recognizing and addressing the problem of limited health literacy lies with all entities in the healthcare profession, from the primary health care team to public health care systems. Making information understandable and accessible to all patients involves a systemic approach toward health literacy in physicians' offices, hospitals, clinics, national organizations, local and allied health professional schools, residency training programs, and continuing medical education (CME) programs. Community based partnerships to help understand and address the needs of the local organizations to focus on the issue of health literacy are needed in the effort to improve health literacy. Non-governmental organizations (NGOs) have recently been partnering with national and international agencies to incorporate informal health literacy programs in both developed and developing countries, so as to improve health care access and safe motherhood initiatives (16). Training and educating health care professionals, teachers, social workers and community volunteers about the importance of health literacy and effective health communication is of vital importance. This can be achieved by a periodic review of the materials and processes in use by the various stakeholders, and by training in both verbal and written communication skills. Health professionals need to be aware of the levels of education and health literacy among the populations they serve. The Women's Health and Education Center (WHEC) supports the following guidelines:
- Disseminated health information needs to be user friendly and efforts should be made to keep verbal and written information simple. The increased use of charts and pictures may be more beneficial in improving communication -- this also includes the development and testing of alternative and text-free educational materials.
- A neutral and friendly atmosphere between the healthcare providers and the clients will help to increase the level of communication and understanding, as well as to improve patient compliance.
- Tailor health information to the intended users: When developing health information, make sure it reflects the target group's age, social and cultural diversity, language, and literacy skills. Local cultural beliefs and customs need to be considered when developing the interventions or programs to improve health literacy rates in the target population. If needed current programs can be redesigned or adapted, based on recommendations made as a result of monitoring and evaluating project outcomes.
- In preparing health information, consider cultural factors and the influence of culture on health, including race, ethnicity, language, nationality, religion, age, gender, sexual orientation, income level, and occupation.
- Encourage staff and colleagues to obtain training in patient communication and use of plain language along with cultural competency.
- Working with and supporting adult education sector at various levels will also help improve the health literacy levels among communities. If necessary, existing policies at the national, state and local levels can be modified or redesigned to improve health literacy outcomes (17).
We hope our efforts help to create groundbreaking initiatives at various levels (partnering with local, national and international stakeholders) in many countries throughout the world. Language, socio-political, economic and cultural barriers and time constraints pose challenges to health care providers. Together we must work to build a healthier world—a world where information and communication technologies help support and enhance health care services and are available for all. Healthcare professionals need to be aware of the levels of education and health literacy among the populations they serve. Use familiar language and avoid jargon when communicating with patients. Use of the active instead of passive voice is many times helpful. Community based partnerships to help understand and address the needs of the local community and consumer health information organizations to focus on the issue of health literacy are needed in the effort to improve health literacy.
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