Chapter 2: Why is Health Literacy Important? Taming the Elephant in the Room

The rapidly changing health environment demands a lot from patients. When we are ill, the decisions we make place us in a vulnerable position, where we must take risks without any certainty of outcome. While health literacy is not a safeguard against this uncertainty, it can help us navigate the territory better with a better greater (if not greater) understanding of adverse consequences

Imagine that you are in Paris on a holiday. You cannot speak French, and you find you are lost. What do you do? You hunt for signs in English; check your map; look up your guidebook; ask passersby for assistance; and try to track n a policeman, who can help you find your way back to the hotel. Similarly, when patients fall ill, they find they are lost and helpless in a healthcare system, which feels like a foreign country, with its own language and culture. Health literacy can help them navigate this system, so they can find their way back to good health!

• An essential life skill: It helps you to seek and use information and take control over your health.
• A public health imperative
• An integral part of social capital: low health literacy is a strong contributor to health inequalities.
• A critical economic issue: Low health literacy costs the US economy 73 billion dollars per year.

The rapidly changing health environment demands a lot from patients. When we are ill, the decisions we make place us in a vulnerable position, where we must take risks without any certainty of outcome. While health literacy is not a safeguard against this uncertainty, it can help us navigate the territory better with a better greater (if not greater) understanding of adverse consequencesGone are the "good old days" when you could depend upon your family doctor to take care of you when you fell ill. Healthcare is changing dramatically, and this change is both a challenge and an opportunity. On the one hand, there is more choice in treatment and more information to guide our choices. On the other hand, theres little point in having so much information if you cannot make sense of it and the deluge of information is often more confusing than helpful. Health care systems are also becoming more complex, because they involve a wider range of health care professionals from many different specialties. However, it often seems that the right hand does not know what the left hand is doing because of a lack of coordination.

The rapidly changing health environment demands a lot from patients. When we are ill, the decisions we make place us in a vulnerable position, where we must take risks without any certainty of outcome. While health literacy is not a safeguard against this uncertainty, it can help us navigate the territory better with a greater better (if not greater) understanding of adverse consequences, and can serve as a road map and a compass on a difficult and unpredictable journey.

However, its not enough to just strive to raise health literacy of patients. For our societies to become health literate, all stake-holders need to be actively involved.

For instance:

Doctors need to tailor their communication to meet the needs of their patients, and to see it as their responsibility to foster health literacy among them.

• Pharmaceutical companies need to educate citizens about their prescriptions. Its not enough to medicate - they need to educate as well.
• Health insurance companies need to be transparent and open. Their plans and policies should empower and inform consumers, rather than confuse them with pages of fine print.
• Politicians need to incorporate health literacy into their policy design, their research agenda and their health objectives for the community.

Unfortunately, health literacy appears to be low worldwide, even in developed countries. According to the World Health Organisation, in the United States, approximately 50% of adults "have difficulties understanding and acting upon health information." In Australia, 60% of the population scored below an optimal level of literacy needed for health maintenance.

In India, low health literacy costs hundreds of crores of rupees each year, in terms of unnecessary illnesses, wasted man-hours, and premature death of productive citizens. People do not know how to prevent diseases such as typhoid and cholera, because they do not understand basic concepts of hygiene and sanitation. Our high infant mortality rates are a national disgrace - but trying to treat one sick child at a time without addressing the underlying problem of poor health literacy is worse than trying to fix a fracture with a band aid.

The sad irony is that most such deaths are preventable, but because poor health literacy cannot be diagnosed with a blood test, it remains the ignored elephant in the room. Health literacy is an issue of social equity, and we need to develop programs that will enable the poor and the disadvantaged to make better use of the available public health services. Doctors can act as powerful agents of change. Just providing free drugs will not help fight disease unless we first empower citizens to take care of their own health.

How does low health literacy affect patients?

• Delayed diagnoses
• Higher number of visits to the doctor
Long hospitalisationLikely to be taken for a ride by quacksLikely to be overcharged, over tested and over treated

How illiterate patients are exploited for clinical trials

India presents an attractive destination for pharmaceutical companies who need to test their drugs on patients through clinical trials. India has a large population, with a varied genetic pool. Virtually all Indian doctors speak English, and the infrastructure is easily and inexpensively available, especially in government hospitals. Clinical trials are scientific experiments, and when they are carried out properly, they can yield invaluable information. However, poorly educated, uninformed patients are atrisk of being exploited and used as guinea pigs for these trials.

Uneducated patients are unable to read or understand the contents of a consent form. Even when the document is read out to them, there is no guarantee that the patient would know what he is signing up for. Unethical researchers (who get paid for signing up as many participants as possible) may exaggerate the benefits of a treatment, offer monetary inducements or attempt to play down the risks. Indias mind-boggling variety of languages and cultures compounds this problem as a majority of healthcare seekers are non-English speakers, while the material thats made available to them is in English.

The Declaration of Helsinki adopted by the World Medical Association in 1964, states, "each potential subject must be adequately informed of the aims, methods, anticipated benefits and potential risks of the study and the discomfort it may entail, and any other relevant aspects of the study." While most clinical trials carried out in India claim to abide by the letter of the law, whether they abide by the spirit is a different matter, altogether. Even worse, when unsuspecting, uninformed subjects of clinical trials get harmed because of slipshod protocols and inadequate safeguards, they have virtually no recourse, as their access to legal representation is far more limited than for the more educated patients.

To reduce the incidence of improper recruiting and testing of vulnerable patients, the Indian government needs to enforce stricter regulation, requiring the presence of disinterested third parties as witnesses. Informed consent should be routinely recorded on video, as these taped interviews can provide court-admissible evidence of ethical behaviour in the event of medical complications, and the wrongdoings that pharmaceutical companies are often accused of. This would eventually protect the interests of all parties.

How low health literacy affects healthcare professionals

There can be no disputing the fact that a patients low health literacy can make a doctors job more difficult. It can be challenging to work with these patients, because it is not clear if they truly understand their condition and would be able to follow the doctors instructions. In todays time of short appointments and limited resources, can find dealing with these patients frustrating, because they do not have the necessary skills to be able to take care of themselves. Sometimes doctors mislabel patients with low health literacy as: "lazy"; "poor historian"; "noncompliant"; unwilling to take responsibility for his own health". This is doubly tragic, because this is the group of patients that needs the most help and time from the doctor.

On a deeper level, it makes developing an effective partnership with the patient a greater challenge. The nature of the doctor-patient relationship has changed significantly over the years, and it is now more important than ever that patients themselves have the ability to navigate and understand healthcare issues relevant to their lives - doctors just do not have the time, energy or resources to be able to spoon-feed them anymore.

As patients are increasingly being expected to become more responsible for their care, it is becoming even more important for doctors to ensure that the health information they are providing is understood and acted on correctly. Low health literacy, simply put, is a barrier to good care. Patients should be encouraged to ask questions and expect answers, rather than expected to passively comply with everything the doctors says. This is important as although patients are far more informed than they were 10 years ago, many express frustration and dissatisfaction with their care because they feel they did not have enough say in the decisions their doctors made for them. Also, some doctors are not supportive of patient involvement in the decision-making process, simply because they believe that the doctor knows best.

• Delayed diagnoses
• A higher number of visits to the doctor
• Longer hospitalisations
• They are more likely to be taken for a ride by quacks
• They are more likely to be overcharged, over tested and over treated

How illiterate patients are exploited for clinical trials

India presents an attractive destination for pharmaceutical companies who need to test their drugs on patients by doing clinical trials. India has a large population, with a varied genetic pool. Virtually all Indian doctors speak English, and the infrastructure is easily and inexpensively available, especially in government hospitals. Clinical trials are scientific experiments, and when they are carried out properly, they rovide invaluable information. However, illiterate patients are at risk of being exploited in these trials, and misused as guinea pigs.

Patients who are unable to read are not able to understand the contents of an informed consent document. Even when the informed consent document is read aloud to them, there is no guarantee that the patient knows what he is signing up for. Unethical researchers (who get paid for signing up as many participants as possible) may exaggerate the benefits and compensation and play down the risks.

Indias mind-boggling variety of languages and cultures compounds this problem in that the vast majority of illiterate patients are non-English speakers.

The Declaration of Helsinki, which was adopted by the World Medical Association in 1964, states, "each potential subject must be adequately informed of the aims, methods, anticipated benefits and potential risks of the study and the discomfort it may entail, and any other relevant aspects of the study." While most clinical trials carried out in India today obey the letter of the law, whether they abide by the spirit of getting truly informed consent from the subject is a completely different matter. Even worse, when illiterate test subjects of clinical trials are harmed because of slipshod protocols and inadequate safeguards, they have virtually no recourse, as their access to legal representation is far more limited than for literate patients.

To reduce the incidence of improper recruiting and testing of illiterate patients, the Indian government needs to enforce stricter regulation, requiring the presence of disinterested third parties as witnesses for illiterate patients. Informed consent should be routinely recorded on video, and these taped interviews can provide court-admissible evidence of ethical behaviour on the part of the recruiters, in case there are complications, and the pharmaceutical companies that run the clinical trials are accused of wrongdoings. This would help to keep everyone honest and protect the interests of all parties.

How low health literacy affects healthcare professionals

The patients low health literacy makes the doctors job more difficult. It is more challenging to work with these patients, because it is difficult to know if they truly understand their condition and will be able to follow the doctors instructions. In todays era of shorter appointments and limited resources, doctors can find dealing with these patients frustrating, because they do not have the skills to be able to take care of themselves. Sometimes doctors mislabel patients with low health literacy as being: "lazy"; "poor historian"; "non-compliant"; "unwilling to take responsibility for his own health". This is doubly tragic, because this is the group of patients who needs the most help and time from the doctor.

On a deeper level, it makes developing an effective partnership with the patient a greater challenge. The nature of the doctor-patient relationship has changed significantly, and it is now more important than ever that patients themselves have the ability to navigate and understand healthcare issues relevant to their lives - doctors just do not have the time, energy or resources to be able to spoon-feed them anymore.

As patients are increasingly being expected to become more responsible for their own care, it becomes even more important for doctors to ensure that the health information they provide is understood and acted on correctly. Low health literacy, simply put, is a barrier to good care. Patients should be encouraged to ask questions and expect answers, rather than passively complying with everything the doctors says. This will help them to improve their health literacy skills.

Although patients are far more informed than they were 10 years ago, many express frustration and dissatisfaction with their care because they feel they did not have enough say in the decisions their doctor made for them. One reason is that patients often do not know enough about their treatment options to make well-informed decisions. Also, some doctors are not supportive of patient involvement in the decision-making process, because they believe that the doctor knows best. Health literacy plays a key role in obtaining informed consent, communicating health risk, and supporting shared decision-making, thus enhancing patient satisfaction.