Wednesday, October 24, 2012

Why we need to tackle the problem of health literacy urgently

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

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

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 3.

3. Why we need to tackle the problem of health literacy urgently

In the past, doctors had access to specialised medical knowledge that was denied to a patient. Patients used to be very impressed with the depth of the doctor’s clinical acumen, and were pleased when he made the right diagnosis and provided the correct treatment. Today, however, thanks to the internet, patients have access to a world of health information that was previously only accessible in medical schools and specialised libraries.

This change can be both a blessing and a curse. Due to the easy accessibility of the information and the limited availability of doctors, many people now rely on the Internet for their health information instead of their doctor. However, the available information is usually complex and may be difficult to understand. Because medicine is an art, there is not usually one clear answer to address a particular health issue and the choice of treatment depends on many factors related to both the disease and the patient’s preferences. Doctors now have to work with patients, so they can understand all the options available to them, and come up with a treatment plan in which both the doctor and the patient are invested. If not, non-compliance with treatment is a serious risk.

Patients now have more responsibility than ever before to take part in their healthcare, and for patients with limited health literacy, this responsibility can be overwhelming and frustrating.  While there is a lot of information on the Internet, a lot of this information is wrong, unreliable and out-dated. Many patients are not sophisticated enough to separate the wheat from the chaff and are easily exploited by quacks. Freely accessible Internet health forums offer hundreds of explanations and treatments for illnesses , but many of these are incorrect. However, naïve readers may not even consult their doctor before following the advice of someone they have never met , just because she seems to share their symptoms, or understands their concerns. Following the advice may or may not be appropriate, and can be quite dangerous if it involves the use of medications – medications that can easily be bought online at the click of a mouse, without a prescription.

Health professionals often feel frustrated when dealing with illiterate patients because they do not know how best to help them. The reasons for this are many:

•    The medical and nursing education curricula are already crowded and doctors are not taught how to communicate with illiterate patients
•    Low health literacy is not be considered to be a priority issue
•    The doctor has only 15 minutes to talk to the patient, and this is simply not enough to ensure  clear communication 

Patients now live an average of 10 years longer than they did in 1948. Older patients have more chronic medical conditions, which can often be managed for many years thanks to modern technology. However, medical management may require multiple medicines, an army of specialists, continuous monitoring of progress and side effects, and adherence to complex treatment regimens.  Older patients are particularly badly hit by poor health literacy. This is a double whammy for them, because even though the complexity of their medical problems increases exponentially as they age, their reading and comprehension abilities decline because of a progressive loss of vision, hearing and cognitive skills. This means that even if they were able to cope when they were younger, they have a much harder time as they age – and this can prove to be a huge burden on themselves, their caregivers and their doctors. The greying of developed countries means that the magnitude of these problems will soon become unmanageable.

As our life styles progressively deteriorate thanks to urbanization, the burden of chronic diseases and lifestyle illnesses (such as diabetes, heart disease and obesity) will increase exponentially. When a person with low health literacy has a chronic disease, serious barriers to self-care can arise.

People living with chronic disease usually have more than one condition and may have a complex care plan, involving multiple medications and multiple healthcare providers, many of whom have no idea what the other is doing. There is usually no coordination of care; and patients may receive inconsistent messages from different doctors as they make their way through the system, leaving them even more confused.

Getting the right treatment and keeping track of medications and appointments is difficult, even for highly educated patients, so you can just imagine the plight of illiterate patients. What chance do they have of being able to cope? Many will fall in between the cracks, but the bigger tragedy is that rather than fix the system, we will blame them for not seeking medical care at the right time!

Most patients living with chronic diseases are expected to manage their own care, under the supervision of their doctor. This includes using monitoring devices such as glucometers, and knowing how to modify their medication, diet , exercise or other behaviours based on the results. However, in spite of this complexity, patients have limited time with their doctor. For example, a typical physician visit to monitor diabetes takes place every 3 months unless there are serious complications and this visit typically lasts about 15 minutes. In that time, the provider must carry out an assessment, order any tests required, answer questions and provide instruction for self-care. Under the best of circumstances, this can be challenging for both the provider and the patient. To be able to expect patients with low literacy to learn everything they need to in these 15 minutes is a tall order.

Time is an important factor in building trust and collaboration between doctor and patient. For adults with literacy barriers, new skills for self-management are best learned through listening to explanations, watching demonstrations, asking questions, clarifying doubts and practicing over repeated visits. Limited time for direct contact gets in the way of this learning process.

Health news in the media

One would have hoped that easy access to information from the media would help to alleviate some of these problems and that patients would be able to obtain reliable information from sources other than their doctors. However, modern trends in mass media have just exacerbated the problem of poor health literacy. Gary Schwitzer of Health News Review examined over 1600 health stories over 5 years and found several recurring problems in them:

1.    News stories, press releases and commercials are often misleading because they exaggerate the benefits of interventions and minimise the harms. For example, you read an article that claims that a new drug reduces the risk of a heart attack by 50%. Your loving wife promptly takes you to the doctor and pressures him into prescribing the drug for you. However, the article does not explain that the 50% refers to a relative risk, rather than an absolute risk. Relative risk means that there was be a reduction from 2 heart attacks in 100 untreated patients to 1 heart attack in treated patients. This is only a 1% absolute risk reduction. This means that the 99 remaining patients had to spend money on buying the drug and risk getting its side effects, without getting any benefit whatsoever. These are not easy concepts to explain to anyone, much less to low-literate people.
2.    News stories seem to equate “association” with “causation”. There may be an association between A and B, but this does not mean that A causes B. For example, NBC news once reported that eating chocolate may decrease heart disease by as much as 37%, and MSNBC reported that drinking coffee may protect against breast cancer. What’s worse is that later stories contradict the earlier ones, leading to confusion and scepticism among viewers.
3.    The third problem was the promotion and overuse of “screening” tests, which are used to test people with no symptoms for a disease. These are often heavily promoted for everyone, which leads to unnecessary testing, anxiety, and even harm due to the tests themselves.

This means that rather than help doctors dispel myths and misconceptions, the media often makes a bad situation worse by misinforming patients, as a result of commercial marketing pressures. Health literacy can help a reader to separate the wheat from the chaff; and not get misled.

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