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Promoting Health Literacy to Put Patients First - Why health literacy matters !

Posted Oct 23 2012 12:53am
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 2.

Chap 2. Why should we worry about health literacy?

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

Health literacy is important at many levels and affects all of us – not just patients and doctors. Health literacy is
•    an essential life skill for individuals: It helps you to seek and use information and take control over your health.
•    a public health imperative: it improves overall population health.
•    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.

Gone 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, there’s 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, but it often seems that the right hand does not know what the left hand is doing, because of a lack of coordination.

Even though medical science has advanced so much, why aren’t we able to put these advances into practice in real life ? Why is obesity so rampant ? Why do people continue to smoke ? Why do people still die of preventable causes ? Is the problem that people don’t know, don’t want to know, or just don’t care? Perhaps one answer is that they are unable to understand and use the health information available to them. Many people, even educated Indians, don’t know what a calorie is, or how to burn it. It’s our job to make health information meaningful, useful, and helpful.

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

However, it’s not just enough to just build the health literacy of patients. For our societies to become health literate, all players need to become involved.

• Doctors need to tailor their communication to meet the needs of their patients , and see it as their responsibility to foster their health literacy
• Pharmaceutical companies need to educate citizens about their prescriptions . It’s 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 design of policy, their research agendas and their objectives for population health.


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 a literacy level regarded as optimal for health maintenance.

If patients do not understand their disease or their doctor’s  instructions, they are more likely to skip medical tests; not take their medications on time; and not be able to manage chronic conditions such as high blood pressure or diabetes. The list of problems that can plague patients with low health literacy is long
•    Delayed diagnosis
•    A higher number of visits to the doctor
•    Increased hospitalisation
•    They are more likely to be taken for a ride by quacks
•    They are more likely to be overcharged, overtested and overtreated

Low health literacy affects all of us. It costs the country hundreds of crores of rupees each year, in terms of unnecessary illnesses, wasted man-hours, and the premature death of productive citizens. People do not know how to prevent diseases such as typhoid and cholera, because they do not understand the 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 biggest tragedy is that all these deaths are preventable, but because the problem of 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 equality; and we need to develop programs that enable the poor and disadvantaged to make better use of health services. Doctors can act as powerful agents of change. Just providing free drugs will never help unless we first teach citizens how to take care of their own health.


Illiterate patients and 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 provide invaluable information. However, illiterate patients are at risk for 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. India’s 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 that “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 which 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 doctors

Low health literacy makes the doctor’s 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 doctor’s instructions. In today’s era of shorter appointments and limited resources, doctors can find dealing with these patients very frustrating , because they are not equipped with the skills to be able to take care of themselves. 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 expected to be more involved in their care, it becomes increasingly important to ensure that health information can be understood and acted on correctly. Low health literacy is a barrier to good care. Activating patients may help compensate for their lower literacy skills by empowering them to ask questions and expect answers, rather than passively complying with everything the doctor says.

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
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