Chapter 14: Lessons in Health Literacy: What India and the US Can Learn From Each Other

By Helen Osborne

Doctors need to present risks, benefits, and other essential data in ways patients can truly understand. Patients need to weigh this information in consideration of their personal beliefs and cultural values. Together, patients and doctors need to make reasoned choices about treatment and care options.

For several years I have been framing health literacy in terms of function. To me, health literacy happens when patients (or families, caregivers, or the general public) and providers (or medical systems, public health organisations, or government agencies) communicate in ways that the other can understand. Mutual understanding is the key to health literacy.

Improving health literacy is an important way to start addressing the many challenges faced by healthcare systems and patients - both in the US and in India.

• There is a shortage of trained medical personnel. In the US, this includes too few primary care physicians and other specialists. This shortage often results in patients having to wait weeks, if not months, for non-emergency appointments. Patients may have to figure out on their own how to manage in the interim. This type of independent problem solving takes health literacy skills.
• When patients eventually see their physicians, visits are often brief, perhaps 15 minutes or less. When hospitalised, patients stays often are short and they may be discharged to home when still ill and in need of care. Health literacy can help make the most of such short visits and stays. For example, patients can come prepared with questions they want to ask. Providers can offer follow-up learning (someone to talk with or a booklet to read or video to watch) to cover what wasnt adequately discussed in the brief encounter.
• Chronic conditions like diabetes are on the rise. To lessen the chance of complications, patients must learn to manage multiple medications, make needed lifestyle changes, and monitor symptoms. This level of self-care assumes that patients have at least adequate literacy, numeracy, and problem-solving skills. But many do not.
• In the US especially, there is a trend toward "activated" and "engaged" patients. This includes the expectation that patients actively participate in making decisions about their treatment and care. It takes time and effort to engage in a meaningful way. Providers need to present risks, benefits, and other essential data in ways patients can truly understand. Patients need to weigh this information in consideration of their personal beliefs and cultural values. Together, patients and providers need to make reasoned choices about treatment and care options.

• Literacy. This refers to a persons ability to read and write, speak and listen, and understand and use mathematical concepts. While many people struggle with such skills, low literacy disproportionately affects those who are older, less educated and at lower socioeconomic levels.
• Age. Older adults tend to have more chronic conditions, take more medication, and face inevitable declines that increase with age. At the other end of the spectrum, young adults may be unprepared to assume responsibility for their own health, wellness, and care.
• Language. India is a land of many languages, alphabets, and dialects. While English is the only official US language, many Americans have only limited language skills or cannot speak and read in English at all. Compounding this challenge, few patients in either country are fluent in the specialised language of medicine.
• Culture. India and the US are both multicultural nations. Even those who look alike and live nearby may not share similar beliefs and values.
• Disability. While two-way communication is often difficult, it can be even harder when one person in the conversation has diminished abilities to see, hear, or remember. With disabilities such as these, a person has fewer options for receptive (listening and learning) and expressive (speaking) communication.
• Emotions. Health communication takes place in a setting where patients feel scared, sick, overwhelmed, or in pain. In the presence of strong feelings like these, patients may comprehend only a little of what is said. They may misinterpret new information in context of what they already believe to be true (whether correct, or not).

Given all these challenges, health literacy is more important than ever. When providers and patients communicate clearly, they can together achieve the ultimate goal of helping patients become expert at being patients.

• Communicate in a variety of ways. There is no one right way to communicate about health. People learn in many ways, therefore communication must also be offered in many formats. Health can be taught using a wide variety of creative tools including comic books, puppetry shows, street theatre, websites, text messaging, videos, podcasts, and other technology.<
• Collaborate. In the US there is a saying, "Dont reinvent the wheel." This means building on the experience of others rather than starting from the beginning. When it comes to health literacy, a lot can be accomplished through collaboration and partnership. There are many examples, such as:
• Collaboration between healthcare professionals and businesses to raise awareness about the importance of wellness and healthy lifestyle choices.
• Collaboration between community agencies and healthcare facilities to teach the public about disease prevention and early detection.
• Partnerships among health literacy advocates to implement communication programmes, measure outcomes, and find cost effective solutions to health literacy challenges.
• Develop policy and provide leadership. It takes leadership from the top to move health literacy forward. In the US, the Department of Health and Human Services, Office of Disease Prevention and Health Promotion is funding health literacy research, developing online health literacy training, and providing easyto-read consumer health information. This agency has also developed national health literacy recommendations and guidelines. One of the most important being used across the country (and around the world) is the National Action Plan to Improve Health Literacy (@https://www.health.gov/communication /hlactionplan)
• Offer patient education. The power of patient information and health education cannot be overstated. In Mumbai, Dr. Aniruddha Malpani and others have developed HELP (Health Education Library for Patients, (@https:// www.healthlibrary.com) - Indias first, and largest, consumer health education resource centre. Through its interactive website and vast collection of seminars, books, articles, and videos, patients can find useful, accurate, and understandable health information on topics they want and need to learn about now.

In India, the United States, and elsewhere in the world we truly are improving health communication. Thanks for being a health literacy advocate.