Health literacy is not an issue only for the doctor’s clinic. It affects the whole community and since prevention is better than cure, we need to work on improving the entire community’s health literacy level rather than only work on one patient at a time. Improving health literacy requires a multi-dimensional effort from all community members.
There are myriad opportunities to improve a community’s health literacy skills and just as communication requires at least two active participants, community health literacy programs also thrive on partnerships. These allow literacy experts and health professionals to share ideas and resources, leverage funds and expand networks. Doctors need to step outside the four walls of their clinics and engage with the community if they hope to have a significant impact on public health. The good news is that because doctors are highly respected members of society, they will usually find it easy to do so, if they are willing to invest the time and energy needed.
Community development approaches. Most people, especially people with low literacy, get most of their health information through word of mouth. The information which doctors in “five star hospitals” provide is not always seen as credible, because poor patients often believe, quite justifiably, that doctors working in hospitals live in ivory towers and inhabit a world which is completely different from theirs. This is why the advice they give is usually impossible to implement in real life. (For example, a doctor may tell the mother to wash her hands before preparing food in order to prevent her child from getting repeated attacks of diarrhoea. But if her taps are dry, where will she get the water from?) Rather than view this as a barrier to effective health communications, why not approach it as an opportunity? This requires a somewhat different role for many health professionals. Rather than viewing their role as providing health information directly, they need to act as facilitators, and to work in partnership with others in the community. The best partners would be patients from the community, who are literate enough to understand what the doctor is saying, and are smart enough to translate this into terms their community members can understand. These people live in the community; and because they talk the local language; understand the local culture; and are aware of the everyday practical difficulties their people face, they are trusted by the community. They can help to design customised health education tools, which are intelligible and practical enough to be followed by their local community.
Social support networks are critical to health, and this involves tapping into existing community networks, such as peer groups, social workers, religious gurus, and political workers. An excellent example of this is the work PUKAR (@ http://pukar.org.in/) has done with using barefoot researchers to improve healthcare in a slum in Mumbai.
Participatory health education. A variety of literacy and public health programs have enabled low-income, low-literacy individuals to actively explore health issues of concern to them. Health professionals take part, not as experts, but as one among a group of equals that includes people with various life experiences and levels of education. This helps the health professional to build mutual trust and respect, so it becomes easier to teach and learn from each other. Doctors need to learn from the positive deviants in the community so that they can try to replicate these success stories.
It’s a sad truth that even though the Indian government is committed to providing free health services to the poor, these services often exist only on paper. There are many barriers that keep the poor - especially poor women - from using them. By working together, health workers and groups of people can bring about changes in the medical system so that it becomes a resource rather than a hurdle for citizens, as they try to solve their health problems. The poor maybe illiterate and ignorant, but they are thirsty for knowledge, which can help them to improve their lives and those of their children. The medical system will not change on its own, though. It will change only when people demand it, and when they offer creative ways to bring the health care that people need within the reach of all. Participatory approaches enable individuals to become more confident and to identify ways in which they can take more control over their lives. They can then go on to teach what they have learned to others.
A. Integrating health literacy into adult basic education
Adult educators work directly with people who face problems with health literacy. They can contribute to the development of health literacy skills, and are an important step towards ensuring better health outcomes for their students. The obvious benefit of improving health literacy is enhancing an individual’s self-efficacy in managing their own health, but there’s more to it than that. Students who enrol for these classes are thirsty for knowledge, and are proud of their new skills. They are keen to share what they learn with people outside the classroom, thus progressing from becoming health literate patients to becoming lay health advisors. The significance of health literacy classes might be visualised as a pebble thrown into a pond. First there’s the initial splash: students learn information and acquire skills to improve their own health behaviour. Then, they share their learning in expanding circles of positive influence through family, friends, and community. Sharing information helps them to take ownership
of it, thus increasing the likelihood of later use.
Adult educators are experts in teaching; and they can master the skills to teach health literacy too. They can play an important role in supporting the activities of health professionals by improving their students’ ability to
• Ask clarifying questions in order to understand a problem better
• Locate information related to a specific health problem
• Fill out forms and ask for help in doing so
• Navigate a hospital
• Understand test reports and results
• Read and understand medication labels and prescriptions
This is an opportunity for learning to solve real life problems, and their students are much more likely to remember these lessons, because they are directly relevant and help them to solve their day-to-day difficulties.
Some adult educators may be reluctant to deal with health issues. They feel that because medical research and information evolves so rapidly, it is impossible to them to stay on top of it all, and they fear giving incorrect information to their students. However, it is not necessary that adult educators also be experts in health education. The most important approach to use for adult learners is skills-based education, which focuses on the fundamental reading, writing, math and communications skills that people need in order to manage their healthcare. When possible, health content can be used to teach these skills, but the curriculum need not be entirely health-based.
A benefit to this approach is that it is transferable to other areas of daily living beyond health. Adults who are able to ask clarifying questions, navigate new buildings and environments, advocate for themselves and understand instructions can improve not only their own healthcare but their children’s education as well! Adults who learn to assert themselves become politically more aware, and function better as citizens who are not afraid to speak up.
While adult education cannot address each student’s specific health problems (something the doctor does in his clinic) it is reasonable to assume that adult education classes can help students learn to
• Interact with bureaucracies and find their way around hospitals
• Better understand their rights and responsibilities as patients
• Understand and follow written and verbal instructions
• Administer medicines safely based on a prescription or a label
• Find and make sense of health information to guide their decision-making
B. Integrating health literacy into children’s education
The Robert Wood Johnson foundation, well known for funding innovative and effective health education programs, has chosen an inspiring project related to health literacy: puppet shows! The MicheLee Puppets travel the state of Florida in the United States, showing parents and children ways that help kids eat more nutritiously for better health. The goal is to reduce the growing problem of childhood obesity and the country, and this highlights an excellent method of communicating with children and adults who may have low-literacy skills. An advantage of plays and puppet shows is that families watch them together, and they can later discuss the show and reinforce each other’s learning at home.
C. Health literacy through gaming and role-playing
Gaming is another way to involve the whole family in improving health literacy. While games are clearly an excellent way to reach children, adults can benefit from and enjoy health literacy games too! Games have the advantages of being engaging, interactive, fun, personalised, and accessible 24/7. They can simulate real situations but without real risks. And of course, people simply enjoy playing games.
Researchers at James Madison University in Virginia, USA, developed an interactive game called “Face the Case,” which is an online role-playing game. Players are given “cases” or health situations involving health literacy issues, such as a cancer patient who wants to explore alternative treatments, or a person who needs home health care. They need to acquire the necessary skills to solve the problems presented. Players have the option of collaborating with other players in the game who have specialised skills, thus reinforcing the knowledge that “you don’t have to do it alone”. The 30 cases in the game present various health literacy issues, all of which must be solved in order to win the game.
Games can also be used to increase empathy with others, which is an important part of improving communication between doctors and patients, and between patients and caregivers. At the Games for Health 2011 conference, Dr. Doris Rusch presented a game called “Elude”, which is designed to educate people to support others with depression.
Fitwits (@ http://www.fitwits.org) is a research project from Carnegie Mellon University in the US that is designed to help prevent obesity and improve health literacy simultaneously. Since 2007, Fitwits uses fun cartoon characters, the Fitwits and the Nitwits, to provide a hands-on educational experience that teaches basic health information about obesity and helps to transform unhealthy behaviours into healthy ones. Fitwits provides parents with an easy way to initiate conversations about obesity with their kids at home, and teachers can use Fitwits in the classroom to engage students in learning about their health. Finally, paediatricians can use Fitwits to lower barriers to talking about obesity and obesity-related illnesses with their patients.
D. Promoting health literacy through storytelling
Health information needs not only to be accurate, but enjoyable and inspirational as well. The real health literacy challenge may not be a lack of information, but rather the ability of the healthcare consumer to act on that information. Anything that can improve that ability is worth trying. Everyone has different learning styles, and story telling is a great way of ensuring that the message sticks. Stories help patients with end stage diseases cope with them, and allow greater sharing of useful information (Day, 2009). Patients dealing with a diagnosis of diabetes, for example, often learn far more from hearing stories told by other diabetics than they do from information sheets, tables of foods, and sample menus, that are dry and boring. Storytelling makes problems and solutions come alive, because it’s easier for listeners to relate to stories. Storytelling is a valuable tool in the quest to improve health literacy – and the good news is that all of us have lots of stories to share – we just need to learn how to do so.
While solutions to low health literacy understandably target adult populations, primary and secondary schools are important partners in crafting long term solutions. Schools have responsibility for developing lifelong learning skills, and just like schools teach students physics and calculus, they need to teach them how to remain healthy by transforming health education into health literacy education.
The ‘product’ of a successful health education effort is a student who is
• A critical thinker and problem solver, who can make sound judgments for himself.
• A responsible, productive citizen who avoids behaviours such as unsafe sex, drunk driving or smoking, which place his health or that of others at risk.
• A self-directed learner, who has a basic knowledge of health promotion and disease prevention, and can grow this knowledge throughout his life.
Health literacy is as important as “teaching a man to fish” rather than just giving him a fish. Teach a student how to find and use health information and services, and you help enhance his health and reduce his risk of illness and injury for a lifetime.
Many countries have designed standards to guide schools in implementing effective health education classes. These will help today’s students to gain the skills necessary to become health literate adults of the future. The National Health Education Standards (NHES) from the US can be viewed @ http://www.cdc.gov/HealthyYouth/SHER/standards/index.htm.
F. Integrating the skills to teach health literacy into medical and nursing education
Health professionals may feel frustrated when confronting patients with low literacy skills because their education and training did not provide them with the tools needed to work with these patients. Research has shown that health professionals lack awareness, knowledge, and skills related to teaching health literacy, and that many best practices for effective communication with low literate patients are not routinely used by physicians (Coleman, 2011). Health professionals cite three barriers to screening for health literacy in their practices: lack of time, lack of reimbursement, and lack of expertise.
According to DeWalt et al (2010) the 3 best practices to improve health literacy that health professionals need to follow include
1. Plain language: use common words when speaking to patients
2. Slow down: speak clearly and at a reasonable pace.
3. Teach-back: Ensure patient comprehension by asking them to teach back the information and instructions received in every encounter.
Your non-medical clinic staff can prove to be a surprisingly valuable asset in communicating with illiterate patients, so please make use of them. Because they are lay people, they are much better able to communicate with patients using local idioms. Many of them are fluent in the local languages; and can act as a valuable bridge between you and your patients. If you respect them and give them importance, they can come up with very clever ways to help you reach out to your illiterate patients.
G. Health Literacy in Libraries
Libraries are playing an important role in supporting efforts to improve health literacy. Most public libraries now have computers and are happy to help their patrons to find accurate health information online. Margot Malachowski, a medical librarian, believes libraries are poised to play a greater role in “patient activation,” or helping to motivate people to find out more about their health (Malachowski, 2011). In many communities, public libraries provide the only public access to broadband Internet services, and thus to health information. Consumer health libraries (such as HELP – the Health Education Library for People, @ http://www.healthlibrary.com) can also help to empower people by providing them with the information they need to promote their health, and prevent and treat medical problems in the family in partnership with their doctor.
H. Teaching health literacy using popular television programming
Television programming can be used in creative ways to help improve health literacy. For example, school students in the USA were shown a clip from the popular medical TV show, "ER", in which an elderly man complained of chest pains, followed by a discussion of the possible causes of chest pain. Then a second clip was shown, in which a doctor suggests that the man may be having a heart attack; this was followed by a discussion of the causes of heart attack. A third clip showed the man being diagnosed with congestive heart failure, followed by a summary of all points that had been discussed so far. Most students found the curriculum interesting, and learned a great deal from it. Integrating TV programming into school health classes can help to make them fun and easy to learn.
I. Patient support groups, peer-to-peer support
People with limited literacy need support from their community, and people like themselves, in addition to their doctor. Patient support groups for people living with certain conditions (e.g., diabetes, HIV/AIDS, etc.) can be extremely useful in providing a non-threatening environment in which patients can ask lots of questions and discuss their needs. These groups also help patients feel less isolated and “on their own” when it comes to dealing with health issues.
In addition, patients may have some existing support systems in place to help them with housing, transportation, childcare or other issues. Some examples include: social service organisations; temples, churches and other religious organisations; NGOs and charities; and workers from local political parties.
You may be able to make use of these resources to support your patients’ healthcare needs by piggybacking on them. If your patients have some local social service agency that helps them, they may be able to assist the patient with their healthcare needs as well. You can even directly connect with these resources by simply calling and asking for their help – most are very happy to work with doctors.
Try to connect your patient with the right kind of support groups or services. This practice is good for building personal relationships over time, and if you have an established relationship with local social workers and agencies, they will be more likely to agree to help your patients with their healthcare needs.
One of the most effective ways to deal with health literacy issues is through a multi-disciplinary approach. It may seem like extra work for you initially, but if you can help build a network of support for your patients both in and out of the clinic, you will actually reduce your burden. You will also be seen as a supportive and caring doctor in the community, and this will mean that patients will prefer coming to you.
If you want to be socially responsible and improve the living conditions of the poor patients in your community, tackling low health literacy is a great starting point. Doctors are respected members of society, and if you want to take on more responsibilities as a leader in your community, you can champion the cause of improving health literacy. You and your staff may be able to create a local team, which includes staff members of the various agencies listed above. In this way, you can share the load and provide the community reinforcement that is so important to reaching people with limited literacy skills. A further advantage of this approach is that it reduces the financial burden on each member of the team, which can be helpful when faced with limited resources. Just remember: health literacy is a big problem, but you don’t have to tackle it alone.
HELP is organizing a conference on “ Putting Patients First Through Health Literacy “. This will be on Sunday, 2nd December’12 at Nehru Center at 10.30a.m. to 1.p.m. The website is www.patientpower.in/2012
The conference will be followed by a health literacy workshop in the afternoon. Helen Osborne, President, Health Literacy, a world renowned Consultant from US , will be delivering the keynote and conducting the workshop. Her website is at www.healthliteracy.com
At this time, we will be releasing the book, Deciphering Medical Gobbledygook: Promoting Health Literacy to Put Patients First , authored by Dr Aniruddha Malpani and Juliette Siegfried. This is Chapter 10 from that book