Improving Doctor-Patient Communication by Promoting Health Literacy

When people talk about the need for health literacy training, they often think first about what learners need to do for themselves. However, there is also a pressing need to teach doctors, nurses and medical students how to communicate more effectively with low-literacy patients. It is important for health care providers to speak the language of the patient - after all, there’s little point in making a brilliant diagnosis if the patient ends up not following the doctor’s advise because he did not understand what the doctor said ! Literacy results from an interaction between the reader and the writer and it is not fair to criticise a patient’s reading skills without considering the skills of the author. The mismatch between what people need and what the healthcare system offers is unhealthy and can be deadly. Too often, there exists a chasm of knowledge between what doctors know and what patients understand. Both parties are equally responsible, and to understand why, we need to look at two concepts – the Curse of Knowledge and the ASK Problem.

“The Curse of Knowledge”. The curse of knowledge, otherwise known as the paradox of expertise, is one of the reasons experts have trouble using plain language to communicate their ideas to others who do not share the same expertise. Doctors spend a great deal of time with other doctors, but not enough with patients with limited literacy skills, which means while they speak fluent “medicalese”, they find it hard to talk to patients in plain language.

The “ASK” Problem stands for the Anomalous State of Knowledge. This occurs when the patient does not have the knowledge needed to ask the right questions to make a sound decision. In order to ask good questions, we must have a fundamental understanding of the problem at hand. The more complex the information to be processed, the more difficult it is to ask the right questions.
To solve these issues, both patients and doctors need training in how to better communicate with each other. For low literate patients, remember that the spoken word is far more important than written communication. Here are some tips for clear verbal communication. None of this is rocket science – it’s simple common sense. Just pretend you were explaining diabetes to your 75-year old grandmother who is hard of hearing.


1. Organize your information.
2. Use common words, not technical jargon.
3. Give your patients a chance to express how they feel and to tell the story of their illness.
4. Make direct eye contact.
5. Use written information as a back-up.
6. Plan with your patients what they can do.
7. Let your patient know what you are thinking.
8. Explain procedures and ask permission during examinations.
9. Focus on your patient, not on notes, X-rays or the computer screen.
10. Check that your patients have understood what you have said.



Translation and Interpretation


It is difficult to achieve seamless communication between patients and doctors, even when they speak the same language. When there are language and cultural barriers, the difficulties are multiplied a hundred-fold. It may seem that an easy solution to the language barrier is to simply translate your pamphlets and materials into local languages. However, because of cultural differences, the materials probably won’t be as useful because there is likely to be a mismatch in values and beliefs. This is what makes translating patient educational materials such a challenging exercise.

Before you embark on translating yourself, check to see if there are appropriate materials already available in the languages you need – there is no need to reinvent the wheel. A few excellent websites to check include: Health Information Translations (http://www.healthinfotranslations.org); Ethnomed (http://ethnomed.org); Spiral (http://www.library.tufts.edu/hsl/spiral/index.php) and Healthy Roads Media (http://www.healthyroadsmedia.org). It is shameful that the Indian government has failed to create a suitable library of patient educational materials in regional Indian languages.

If you decide to translate the material yourself, be sure to enlist the help of your patients! Foods, customs, traditions and rituals are often different between cultures and they must be relevant to the reader in order to ensure comprehension. Once translated, materials should be back translated into English to ensure that no changes in meaning or content were introduced.

Interpreters can assist both health professionals and patients in improving health literacy, and better outcomes have resulted from the use of competent language services. The main function of the interpreter is to convert a message from one language to another, preserving the original meaning at all times. Many view interpreters as neutral individuals who transmit information back and forth - the "interpreter as a conduit" model. In real life, however, interpreters are often active agents, negotiating between two cultures, and assisting in promoting culturally competent communication. The translation may not be literal and may involve the use of metaphors and ideas that have no direct equivalent in the second language. This role is closer to that of a co-diagnostician, as interpreters decide which medical information is valuable, seek illness-related information independently, and participate in the diagnostic process. A good interpreter serves as much more than just a translator, but also as a cultural bridge between the patient and provider. “As interpreter, my heart is with the patient. I interpret what the patient feels and where he is coming from. But my mind is with the provider – where their knowledge, their wisdoms and their scientific values are. (Navajo Interpreter)”

The use of family and friends as interpreters is not always in the best interests of the patient. Unless the situation is an emergency, there may be issues with confidentiality, conflicts of interest, and a lack of familiarity with medical terms. Untrained interpreters may miss, add, or substitute information, and they often do not understand the importance of interpreting everything the patient says. They are likely to include their own thoughts and opinions and impose their own judgments as they speak. For example, if a family member knows someone that was cured of a similar condition using a certain medication, they may be convinced that the same medication will work on this patient. They might not understand that differences between patients can mean significant differences in treatment needs. In addition, it is very difficult to be objective when you are talking about a loved one. Finally, patients themselves may be less likely to be open about confidential or personal information with certain family and friends. When possible, a trained health interpreter is best. If one is not easily available, you can use the help of online interpreters using Skype; and there are also commercial organisations that offer these services through the telephone.

The health issues encountered by immigrants reveal the need for interactive, two-way health literacy efforts. True dialogue can only be achieved if health literacy is perceived as a goal for both the patient and the provider. In the centre column are suggestions for both sides to improve the likelihood of a successful health outcome.

Patient navigation and patient advocacy

In your practice, you may wish to consider using patient navigators or patient advocates, who help low-literate patients with the complex process of managing their health. In 1990, Dr. Freeman established the first Patient Navigation programme at a hospital in Harlem, New York, USA when he noticed that many poor or low-literate patients were either avoiding cancer screening altogether, or not following through on their abnormal test results. The purpose of the programme was to help improve access to cancer screening and ensure proper follow-up among poor patients. After 5 years, results showed that the 5-year survival rate for these cancer patients increased from 39% to 70%! Poor people face many barriers to getting cancer screening and appropriate follow-up. These include: financial constraints; transportation; and bias amongst healthcare staff. Patient navigators are individuals who guide patients with suspicious test results (e.g. possible cancer), through the various complex procedures in cancer care and help ensure they get the right tests and follow-up at the right time. They also assist the patient to receive treatment with respect and compassion.

Patient Advocates (http://www.patientadvocate.org) are similar to patient navigators, but their role is expanded to include help with filling out complex forms, accessing healthcare and disability service, s and negotiating financial issues such as medical debt. They help patients navigate the maze of health insurance throughout their care.

Patient advocates come from many health professions including nursing, medicine, and social work. They have the skills needed to assist patients (and their families) with navigating the complex maze of forms, buildings, and people involved in the healthcare system. They use their skills to help patients make the right decisions for themselves.

The most effective patient advocates are trained in low literacy and cultural communication issues and in how to navigate the healthcare systems in their area.


Many hospitals have a Department of Medical Social Work; and medical social workers are trained professionals who can help your poor patients to get the medical care they need, at an affordable rate. Learn to make use of their skills!

Health Coaches

Most doctors tell patients to improve their lifestyle in order to remain healthy. However, no matter how well intentioned your patient maybe, we all know that it’s hard to lose weight; stop smoking; and start exercising. Even if your patients know what they need to do, actually incorporating these changes in their daily behaviour can be very difficult. This is where health coaches come in. A health coach is trained to help people break their goal into manageable steps, nudge them in the right direction, track their progress, and identify and overcome personal roadblocks. Like traditional coaching, health coaches utilize goal setting, identification of obstacles, and use of personal support systems, thus setting up an accountability partnership that is focused on helping people to reach their health goals. Doctors just don’t have enough time to spend with their patients going over nutrition, lifestyle and stress reduction. Health coaches can fill that gap, thus preventing health problems from becoming worse.

Learning from patients

Communication is a two-way street, and your task is not only to teach your patients, but to learn from them as well. If you keep your eyes, ears and mind open, you will find that patients have expertise that can be used and shared, if they are systematically involved. You owe it to your patients that they feel respected and treated as people who bring practical experience to the table.

•    Make use of the expertise that your patients bring as learners.
•    Respect, involve and appreciate them.
•    Recognize that patients can teach health professionals.
•    Support organized learners’ groups and activities.


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 free 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, Medexplain : Promoting Health Literacy to Put Patients First , authored by Dr Aniruddha Malpani and Juliette Siegfried. This is Chapter 7 from that book

Creating effective partnerships with patients

Look at your clinic through your patient’s eyes by putting yourself in their shoes. Imagine you have poor literacy skills and have difficulty understanding maps, forms and schedules. You find long words and technical explanations intimidating. You are ill; scared of doctors; and are worried about how much the treatment is going to cost. As a patient coming into your clinic, what would your experience be like? What paperwork will you have to fill out? What instructions will you have to follow? If you need any tests, will you be able to find where to go? Is your clinic patient-friendly?

Creating a patient-friendly environment will go a long way towards establishing a healthy partnership with your patients, which will lead to better health outcomes.

Your clinic staff can play an important role in ensuring your clinic is “health literate.” They are the face of your clinic, as well as your eyes and your ears, and they spend far more time with your patients than you do. They can encourage (or discourage) patients from speaking up, and can significantly influence the overall experience a patient has with your clinic. Non-medical staff can help ensure that simple and routine communication — such as appointment slips, when to call about a test result, and filling in consent forms — are clear, easily understood and followed up on. In addition to ensuring that all staff exhibit an attitude of helpfulness towards all patients, make sure they listen respectfully to your patients. Clinic staff members are busy and have lots to do, but they should not assume patients understand everything perfectly right away. Your patients are the most important people in your clinic and they should all be treated as VIPs !

Friendly, personal interaction is the key. Appointments should be scheduled by people, not by answering machines. From the receptionist to the nurse, everyone should speak clearly to patients, and avoid using long words when possible. Friendly staff can be a major asset; and if they see you treating your patients with care and consideration, they will mirror your behaviour and attitude. Because they are lay people themselves, they are much more likely to be able to understand what the patient goes through and can be invaluable in keeping your patients happy!

If your patients need help in filling out forms, make sure this assistance is easily available. Ensure that forms are not too complicated or crowded and only collect essential information. Provide your patients with a private area in which to complete them, so the patient doesn’t have to discuss personal issues in the waiting area.

If you need to refer your patients to specialists, pathology laboratories or imaging centres for further tests, simply providing them with a card and telling them to call a phone number for an appointment may not be enough. Making such calls can be intimidating to patients with limited literacy skills. Help your patients make the call, and explain to them what they need to do once they get there. Include a simple map to the location, and ensure that test requisition forms are attached to the appointment slip, so they don’t get lost.

The key to patient engagement lies in building health literacy at the level of the family doctor and ensuring that physicians help patients to help themselves.The consultation is the primary bedrock of clinical medicine, and each consultation is a learning opportunity for both doctor and patient which in turn builds up ‘learning capital’ which has both individual and community benefits.Both patient and doctor benefit by learning from each other. Encouraging patients to take more control when they are ill is also an effective tool for improving public health. Paternalistic styles of practice tend to create unhealthy dependency and undermine self-reliance. Promoting involvement and a sense of ownership of their health care could be the best way to ensure that people adopt healthier lifestyles.

“Patients are at the heart of the health service of the future. The principle of patient and user involvement has become ever more important and the health service has moved beyond an ‘informed consent’ to an ‘informed choice’ approach.” (Wanless Report, 2002).

How adults learn

Every appointment is an opportunity for teaching and learning , both for the patient as well as for the doctor. However, given today’s real life constraints, is expecting doctors to teach patients asking for the moon? Doctors are in a hurry. They must rush through most encounters with patients; and the average physician listens to a patient for fewer than 22 seconds before interrupting. Patients also contribute to the problem. They “don’t ask, don’t tell”, and often keep silent when they should speak up. If they have trouble understanding their medication instructions, they may not say so, because they are ashamed of their illiteracy.

The trick is to think of your patients as adult learners and there are four principles of adult learning you need to remember.
•    Adults need to feel respected in order for learning to take place
•    They need to want to learn
•    They learn best by active performance
•    They need feedback regarding their progress

 Your first question should not be “What do I want my patient to know?” but “What do I want my patient to be able to do?” Information on its own is sterile – it needs to be put into action to become valuable. Adult learning is self-directed learning, where learners own the learning process and determine their own needs, goals, and priorities - you simply serve as a guide. 

When communicating health information to your patients, remember a few principles about how adults learn best:

Health topics should address current needs and interests. Rather than give a general overview of a particular health topic, make the message personally relevant and useful . If this is tailored to the patient’s needs, and is based on what the patient needs to do to get well, he is far more likely to remember it. You need to start from where your patients are.

•    Information should be practical and should relate to everyday occurrences. For example, if you want your patient to eat or drink certain foods, be specific and relate them to the patient’s usual shopping trip and mealtimes. If you want them to perform certain exercises, ask about their daily schedule and how they might fit these exercises in.
•    Use context. Adults learn better when new information is related to things they already understand. If you want them to take a new medication in the morning, for example, suggest that they take it when they brush their teeth. Providing concrete suggestions will help them to understand your advice.
•    Allow patients to direct the conversation Ask the patient what issues they would like to discuss, rather than unilaterally presenting what you want them to know. Use open-ended questions such as “What questions do you have?” rather than simple yes-no questions like, “Do you have any questions?” which are too easy to simply say, “No” to in response. Encourage patients to ask questions, and listen carefully. This is not easy for most doctors to do, so you will have to practice. However, it’s very useful to do this – you will learn a lot if you allow your patients to teach you.
•    Use “teach-back”. One of the most effective ways to ensure your patients have understood what you have told them is to request them to teach the information back to you after you have explained it. It can be very useful to ask the patient to repeat your advice (using their own words) to the person accompanying them. This repetition helps them to retain the information. You will be surprised how easy it is for patients to misinterpret something, even though you think you have done a masterly job of explaining it. This is why there’s no point in asking - 'Do you understand?' because they will always say 'Yes', and you don't know what they have understood. Instead, try saying, ' When you go back home, what are you going to tell your husband about today’s visit?'
•    Use graphics. A picture is worth a thousand words, especially for illiterate patients. You don’t have to be an artist – even simple line drawings can help get a complex idea across. Provide alternatives to written text when possible –anatomic models can be extremely helpful. Combining audio, visual, and experiential learning is an excellent way to facilitate understanding. Encourage patients to view additional resources during their visit – many are happy to learn more about their health while they are in your clinic. You can play patient educational DVDs on your TV screen which they can watch while they are waiting for you, or they can view Medline Plus Interactive Health Tutorials online, which offer explanations of health conditions in an easy-to-use, multimedia format at http://www.nlm.nih.gov/medlineplus/tutorial.html.
•    Create a website. While you may not have enough time to spend with each patient face to face, if you create educational materials and publish these on your website, your patients can then review them from home at their leisure. You don’t even have to actually create materials – you can simply provide links to other websites that provide reliable information.
•    Tell stories to make it personal. If you tell your patient what happened to someone with a problem similar to his, he will remember this very vividly. It’s helpful to use a bit of imagination when crafting your stories, to make them even more memorable.
•    Use metaphors. Metaphors help frame an idea in a familiar context. For example, you could use plumbing as a metaphor for the digestive system, or the concept of car maintenance for the importance of regular health screenings.

Using plain language

Most people, regardless of literacy level, prefer the use of simple, plain language when it comes to health information. Patients with limited literacy have a hard time understanding written materials because they cannot understand a text by just glancing at it. They cannot skim and are forced to decipher the meaning of each word, one word at a time. This is hard work, because they literally have to plough through each line of text, word-for-word & line-by-line. This takes them a lot of time and concentration and they often get stuck at long multi-syllabic words. They are forced to skip large blocks of text when these are too complicated, and they get lost and confused very easily. If you want to better understand what a patient with poor literacy has to deal with, try reading a page written in a foreign language – or try making sense of the fine print in a legal document.

Physicians must become bilingual, not in the sense of being able to speak another language, but being able to use words that patients can understand. Using words like bleeding instead of hemorrhage, swelling for edema, heart attack for myocardial infarction, and cancer for carcinoma goes a long way to improving patient understanding. The entire medical team – nurses, medical assistants, and receptionists – can play key roles in helping patients gain greater understanding if you train them to use plain language – just tell them to imagine that they are talking to their elderly grandmother who is hard of hearing !

Patients must do their part as well and I ask my patients to do their homework before coming to their appointments, ready “to teach and to learn.” The Ask Me 3 program will help you to help your patients. Teach your patients to always ask these three questions each time they talk to a doctor, nurse, or pharmacist:
•    What is my main problem?
•    What do I need to do?
•    Why is it important for me to do this?

If we want to help our patients, we need to create materials that are easy for them to understand. This is where plain language comes in - plain language is simply communication your audience can understand the first time they read or hear it. Remember George Orwell’s advise :
•    Never use a long word where a short one will do.
•    If it is possible to cut a word out, always cut it out.
•    Never use a foreign phrase, a scientific word, or a jargon word if you can think of an everyday English equivalent.

Plain language is easy  for patients to read, but you have to work hard in order to write simply ! As Nathaniel Hawthorne said, “Easy reading is damn hard writing.” It’s worth noting that plain language is NOT about dumbing things down. It’s a way of speaking and writing that helps people:
•    Find what they need
•    Understand what they find, and
•    Use what they find.

Plain language is friendly and conversational.
Emphasise important points first .
Use an active, personal voice (e.g., use “you should” rather than “one should”).
Use short sentences and common, everyday words, instead of medical jargon.

Sometimes, doctors try to impress their patients with their erudition, by using long and complex terms. You may actually end up scaring your patients away, because they may feel that if you cannot take the trouble to explain things properly, you will not be able to provide good medical care.

Conversational language is a far better way to encourage a dialogue, because your patients will be more likely to remain silent and hide the fact they do not understand what you are saying if you use words they are not familiar with. Some examples of preferred plain language for common medical terms are:

Analgesic = pain killer
Contraception = birth control
Hypertension = high blood pressure
Lipids = fats in the blood
Monitor = keep an eye on
Oral = by mouth

Lots of doctors give their patients educational handouts and brochures and feel they have done their job as far as educating their patient goes. The problem with this approach is that the written word is not interactive. It cannot:
• Answer questions when the patient asks them
• Provide alternate ways of explaining things
• Always be understood by the reader if the reading level is too high

While creating suitable patient educational materials in plain language is an important step in the right direction, it is not enough. It is important for your staff to create a “blame-free” environment in which patients with low health literacy skill levels can seek help without feeling ashamed or stigmatized. Please do not blame patients with limited literacy for their lifestyle and health practices. Low literacy limits opportunities and resources, and reduces the control they have over their lives. They do not have the luxury of being able to make informed choices about their own lifestyle. They feel powerless and helpless – and they often are. Please don’t wash your hands off their problems or treat them as second-class citizens -they need your help and kindness much more than other patients do, simply because they are vulnerable and lost. If you treat them with respect, your staff will also do so.

Most doctors feel they have excellent bed side manners and communicate well with their patients , so they do not need to worry about these fundamentals ! However, as George Bernard Shaw pointed out, “The main problem with communication is the assumption that it has occurred.”


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 4 from that book

Does my patient have low health literacy?

While it’s easy to make a diagnosis of jaundice by examining the patient , there are no visual signs to tell doctors who is health literate and who is not. There are many myths about who has limited literacy skills, such as:

•    They have a low IQ and are slow learners
•    They look different from people with high literacy skills
•    Years of schooling correlates with literacy skills
•    They are from ethnic minority populations
•    They will admit that they have limited literacy skills


Doctors often make mistakes when estimating a patient’s health literacy. They may assume poor patients are stupid, or that rich patients understand everything. Both of these stereotypes are incorrect. However, there are clues that can help you know if your patient might need extra help, if you pay attention. For example, if your patients complete their forms incorrectly, or have left many blanks, it may be due to limited literacy skills. Taking medications incorrectly can also be a clue to their lack of understanding of medical terms. Poor communication has many side effects, and your low-literate patients may:

•    Miss appointments frequently
•    Not be able to explain their symptoms clearly
•    Have difficulty complying with treatment instructions
•    Not follow through with tests or referrals to other providers
•    Not read the patient educational materials you provide
•    Not be able to explain what a medication is for

Despite these clues, limited health literacy is often a hidden problem. Most people with low literacy skills go undetected by their doctors, because they go to great lengths to hide their literacy problems. They are ashamed and carry a lot of emotional baggage from many years of feeling stupid. This is a very touchy issue for them, and they will often clam up because of humiliation and frustration. Many low-literate patients are surprisingly smart and have figured out ways to hide their limited literacy skills from others by memorising things they have read before or making intelligent guesses that cleverly camouflage their lack of understanding. Patients often wish to be amiable and a smile and a nod should not be mistaken for agreement or comprehension. Ironically , they may also not know enough English to tell you that they don’t understand what you are saying. Remember that even people with proficient literacy skills can fail to understand complex instructions and health information when they are ill; and many patients are reluctant to ask questions so as not to appear stupid, or because they do not want to annoy a busy physician.

One simple way to assess whether patients have adequate health literacy skills is to conduct a “brown bag medication review”. Ask patients to bring in all the medications they take (both prescription and non-prescription) to their next appointment and to name each of them one by one; explain what each is for; and how often they take them. You may suspect low literacy skills if the patient struggles to read the label on the bottle or if they pour out the pills in their hand to look at them in order to identify them.

There are several formal assessment tools available for use in the clinic, such as the following:

Newest Vital Sign (@ www.NewestVitalSign.org)

Rapid assessment of health literacy in medicine
(@ http://www.rcmar.ucla.edu/rcmar_wiki/Literacy_REALM.html)

Short assessment of health literacy for Spanish speaking adults
(@ http://www.ncbi.nlm.nih.gov/pubmed/16899014)

While these resources can help you assess your patient’s level of health literacy scientifically, their major limitation is that they only give an approximation of reading skills and are incapable of assessing other important aspects of health literacy, such as understanding, motivation and the ability of individuals to access or use information concerning health and healthcare.


Universal Precautions

It’s safest to assume that everyone can have difficulty understanding health information. Universal Precautions are a method of minimising risk for ALL patients, because you do not know which patients have trouble understanding. The idea is similar to taking universal precautions against the transmission of blood borne infectious diseases when providing medical care, because you do not know which patients are HIV or hepatitis positive.

Many healthcare professionals find it challenging to practice Universal Precautions, because they have to change the way they think and talk to their patients. They also may fear they are “dumbing down” the information, or that patients will be insulted by their use of “ simple language”. However, patient surveys have shown this not to be true. All patients prefer simple and clear communication and plain language resources provide the means to moving up the ladder of health literacy.

In brief, universal precautions include 4 main areas:

1.    Improving spoken communication
2.    Improving written communication
3.    Improving self-management and empowerment
4.    Improving support systems

Improving spoken communication includes using “plain language” and the “teach-back” technique for clear verbal communication. Improving written communication involves selecting, and creating written materials that patients can understand and make use of easily. Improving self-management and empowerment means increasing self-efficacy and self-care, thus improving adherence to treatment. Improving support systems involves collaborating with professionals and organisations inside and outside the healthcare system to help patients carry out the advice of healthcare professionals. We will address each of these issues individually in this book.

To help healthcare practices implement health literacy universal precautions, The Agency for Healthcare Research and Quality has created a Health Literacy Universal Precautions Toolkit (@ http://www.nchealthliteracy.org/toolkit/) for health professionals. This provides step-by-step instructions for healthcare practices and offers a systematic approach to simplifying medical care and helping patients get the right medical care.

For there to be a solution, the problem must be recognised. This is not an easy task, because illiterate patients are masters at hiding their inability to read – after all, this isn’t something that they want to be advertised. With all of our progress and technology, people are still slipping through the school system unable to read. The educational system has failed them; does the health care system have to fail them as well?


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 4 from that book

Health Literacy – a powerful shield against medical errors

Health Literacy – a powerful shield against medical errors
By Rajan Madhok and Nikhil Datar

The first precept of medicine is – Do No Harm. However, tragically, medicine does cause harm, and The Institute of Medicine Report in 2001 showed that medical errors were the eighth leading cause of death in the USA. This is not surprising, considering the fact that healthcare delivery is a complex system, involving many players and multiple processes. This is why patient safety has become a matter of serious public health concern in recent years, and The World Health Organisation responded by creating the World Alliance for Patient Safety. Many initiatives have been launched globally , ranging from efforts to establish the extent of the problem; identifying root causes; campaigning for legislative changes to minimise harm due to faulty medical devices or poor professional performance; to empowering patients through raising awareness.

Because the Indian healthcare system is so complex , we need a multi- pronged approach to promoting safe medical care.
 1.         Creating systems for recording, learning and reporting on the quality of medical services and adverse events in a ‘balanced’ manner.
2.         Implementing proven patient safety interventions, such as the Global Patient Safety Challenges work on hand hygiene; the surgical checklist; and mandatory compliance with ‘Never Events’.
3.         Empowering patients to question and work with professionals, for example through the Patient Safety Alliance.
 4.        Capacity-building by educating students using the WHO curriculum on patient safety; and training all clinicians through distance learning, for example through the People’s Open Access Education Initiative (www.peoples-uni.org).

 However, none of these initiatives can work unless we deal with the issue of literacy and especially health literacy, which is of increasing concern for professionals and policymakers, as it is a primary factor behind health disparities. The Healthy People 2020 initiative of the United States Department of Health and Human Services has included it as a pressing new topic, and designed objectives to address this in the decade to come.

In India, the complexities of poor health literacy are further compounded by the variety of regional languages and the absence of one single unifying language. English, per force, has had to occupy that unifying role. However, this has meant that many are left out as they don’t have sufficient knowledge of English to understand and comprehend this foreign tongue. Indians who have been educated in the vernacular medium are often not able to comprehend basic medical terms, because these are in English.

 This double whammy of unsafe care and poor literacy needs to be addressed on a war footing if India is to reduce health inequalities and ensure affordable health care to all. The issue of health literacy is context dependent, just as all health matters are. What may be relevant in one part of the world may not be applicable in others, and hence the overall PEEST (Political, Economic, Environmental, Social and Technological) context must be kept in mind when designing solutions. There is a danger of making the issue too narrow by focusing solely on individual care, important though that is. We must acknowledge that the reason why most developed countries have made faster progress is the level of awareness and responsibility felt by their governments. Sadly, in India, there is very limited ownership of such problems, and hence a key issue like ‘health literacy’ is treated as an orphan. Both policy and key decision makers seem to be blissfully unaware of how serious the problem is and masterly inactivity seems to be the commonest response.

However, this particular elephant in the room will not go away if we ignore it. Overall, it seems that we need a three-dimensional model to take the agenda forward; we need to consider:
-       Type of action: ranging from governmental policy to lobbying for individual empowerment
-       PEEST context: to discover opportunities and challenges and to clone success stories
-       Geographical location: what is suitable at a national level and what is best left for local action
Well-informed patients are powerful agents for promoting patient safety and act as the first line of defence against medical errors. The more involved the patient is the less likely there is to be an error. However, a very common error on the part of doctors is that they blithely assume that patients understand everything they tell them. This is often not true, especially when the patient suffers from poor health literacy. If the patient does not understand the doctor’s instructions, the scope for compromising patient safety rises dramatically.
 Patient Safety Alliance: a case study (www.patientsafetyalliance.in)

 The Patient Safety Alliance aims to create a common platform for health care providers and the public, with the objective of empowering patients and supporting health care professionals in reducing medical errors. This initiative was recently started in Mumbai. The Patient Safety Alliance recognises patients as partners and key stake holders in managing their conditions and in health care planning and delivery. The recent mantra “ No decision about me without me” from the NHS in UK, which seeks to place patients at the centre stage of all decision-making, has been a guiding principle for PSA.

Empowering patients through education and awareness building activities is being done through “Be Alert - Be Safe” workshops, where the community is trained to understand patient safety issues. The aim of these workshops has been to encourage patients to take an active role in their own health care management.
 Since communication failure between doctors and the patients is a major patient safety issue, the PSA has created a module to overcome this barrier. It has sought to empower patients by encouraging them to ask their doctor questions. The traditional ‘God’ like stature of doctors in Indian society inhibits patients from questioning them, and has impaired meaningful doctor- patient communication. We are helping patients to become assertive and not aggressive, by providing them with the right scripts, so they can ask questions without antagonizing their doctor. Educational modules such as “Preventing Infections: Role of patients”, “ How to avoid medication errors”, and “ Use of the Internet to find evidence based health information” have brought a sense of empowerment, mutual respect and accountability for all stakeholders.

 These workshops are conducted in various local languages. Audiovisual resources specifically recorded in Indian languages are used so that there are no language barriers in understanding the subject. The Patient Safety Alliance has created a few simple toolkits in local languages (checklist for admission and discharge; and medication card, for example) which are freely available on our website. Improving awareness about patient safety and thus creating a demand for safe health care is a major driver for changing the existing culture to a more evolved culture of prevention and patient safety. 

In this movement, key opinion leaders from the community have taken an active role in propagating the message of patient safety. The local media, especially the Loksatta newspaper, was very helpful, and ran a series of articles in Marathi (the local language) to raise awareness of this problem. This helped to bring this burning issue to the attention of senior government officers who craft healthcare policy, who would otherwise have been health illiterate about patient safety.

 Adaptation of international material to Indian situations; creation of resources in local languages; and creating a culture of awareness have been the key interventions to promote patient safety. These efforts have also made patients more aware about how they can contribute towards safer health care.

 This is an early example of how solutions are being created taking into account the levels of literacy of various stakeholders: for illiterate people the use of verbal communication; for functionally illiterate people, the creation of materials in local language; and the use of media to raise levels of health literacy amongst decision makers. 

Patient safety is a global problem, but its impact is much more severe in India because of our widespread poor health literacy. While it may be in the best interests of corrupt politicians to keep their vote banks illiterate and ignorant, the lack of transparent governance adds enormously to human misery. With nearly 4 crores Indians going bankrupt every year due to the high costs of their medical care, the Indian story is a tragedy on the grandest scale. The irony is that when these poor people do access healthcare, very often the care is unsafe. “Education, education, education” – the favourite sound bite of politicians sadly remains just that – a sound bite with limited follow up. India needs a massive programme of not just literacy but also health literacy for budding clinicians and policymakers if it is to ensure universal, affordable and safe healthcare, and thus hold its head high amongst developed nations. 

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 4 from that book and has been authored by Dr Rajan Madhok  and Dr Nikhil Datar.

How you can improve your own health literacy

You are literate, but are you health literate? Do you know the difference between LDL cholesterol and HDL cholesterol? Can you make sense of your hospital bill? Do you know which health insurance policy offers you the best deal? Can you decipher your doctor’s medical gobbledygook? Do you know how to get a second opinion? Does your doctor respect you? Medicine is advancing in leaps and bounds, but are you equipped with the skill to take advantage of these innovations to live a longer, healthier and happier life ?

Health is a very personal issue; and you are given only one body - it is your duty to take the best care of it possible. While having an expert doctor by your side is very helpful, you cannot outsource this responsibility to someone else. While financial literacy can help you become wealthy, health literacy is even more important, because all the wealth in the world means nothing if you are not healthy. Healthcare is complicated and the health care system can be confusing, but the good news is that low health literacy is treatable and beatable and you can improve your ability to find and understand health and medical information.

To improve your health literacy:
•    Speak up and ask questions. Then, make sure you get and understand the answers. If you don't understand, ask the doctor or nurse for more information.
•    Slow down. Ask your doctor to speak slower and with simple words that avoid confusing medical jargon.
•    If photos or illustrations help you understand medical details or how your body works, ask for visual aids.
•    Repeat information back to your doctor or nurse. After he gives you directions, repeat those instructions in your own words. Simply say, "Let me see if I understand this." This gives you a chance to clarify information.
•    Bring all your medicines to your next doctor's visit. Ask your doctor to go over all of your drugs and supplements, including vitamins and herbal medicines.
•    Request someone to accompany you. This might be especially true when you expect to receive important information.
•    Let the doctor's office know you need an interpreter if you don't speak or understand English very well.
Be sure you receive written, detailed instructions for all prescriptions and all pertinent information discussed during medical visits. Ask for a copy of all lab and test results and your doctor’s dictated notes, so you can review the information at home at your own pace.

Learn to be curious and read a lot – this is the best way of sharpening your literacy skills.  The Internet can be a great source of health and medical information if you use it wisely.

If your need help in making sense of the medicalese in your lab reports or scan results, please use the free Medical Report Jargon Buster(http://medexplain.in/). You simply have to upload your medical reports to the website , and the jargon buster will provide a simple explanation of any medical term within the report.

Take your time. Online research can take longer than you would expect. If you search too quickly, you can end up with incorrect information. The information may be confusing initially, but it will become clearer over time as you polish your skills.

Use reliable websites. These are often ones that end in “.gov” for government, “.org” for nonprofit organizations, and “.edu” for medical schools and colleges. If you use a “.com” website, go to the “about” section to see if the sponsor has a financial stake in the information. An excellent starting point is http://healthlibrary.com/healthwise.php

Rely on many sources. Check several trusted websites to see if the information is trustworthy.

The Internet is not your doctor: Talk to your doctor about any information you find online. If he or she doesn’t want to talk about what you’ve learned, go search for a new doctor.

Informing yourself is a worthwhile investment, and you do not have to become a hypochondriac to become well informed. Don’t underestimate your abilities – there are lots of valuable resources available. Bookmark reliable sites and invest in a medical dictionary and encyclopedia so you can decipher unfamiliar terms and put the information in the right context.  Discuss what you find with knowledgeable friends – they can help you resolve your doubts. Finally, try to teach someone else – this is the best way of learning !

Being health literate offers many benefits.
•    It promotes self-care, so you can do as much for yourself as possible.
•    It helps you to understand evidence-based guidelines, so that you can ask for the right medical treatment - no more and no less
•    It arms you with “Veto Power”, so you can say “No” to medical care you don’t need, thus preventing overtesting and unnecessary surgery.

When you fall ill, you hope to get the best medical care from their doctor. In a perfect world you'd have the perfect doctor who would have plenty of time, infinite wisdom, low fees, be totally  honest yet  compassionate,  have a  conveniently  located  clinic  and understand your emotional as well as medical problems – in short, one who treats you as a VIP! Since it's unlikely you are going to find this  doctor,  you're going to have to take active charge of your own medical care. 

Medicine, as both a science and art, often requires choices and there are no "right" answers - you need to make your own decisions - after all, it's your life. While you obviously have a vital interest in treatment decisions and outcomes, unfortunately you lack the medical knowledge and skill to be able to decide alone. This is where the concept of health literacy comes in, so you and your doctor can function as a team.

When you are a patient, you need to wear many hats, and health literacy will allow you to do so:

Medical information researcher: The more knowledgeable you are about your problem and its treatment, the better are your chances of  getting  the right treatment. Educate yourself - you need to become an informed participant in your medical care in order to ask the right questions and to participate in making decisions about your treatment.

Medical team manager:  You will have to find, evaluate, select, hire - and sometimes fire  - members of your medical team. As an enlightened patient, you need to remember that you are the one in charge of your body.

Treatment decision maker: You will have to decide which treatment to choose. Sometimes the choices are straightforward, but sometimes they can be very confusing. A good doctor will offer you all the options and help you to decide - but it is finally your right (and responsibility) to select which is right for you. You cannot afford to leave everything up to God - or up to the doctor either.

Medical record keeper. You must keep all your records - this can be very helpful if you need to change doctors or get a second opinion. Using a PHR ( www.myphr.com) can be very helpful - and even lifesaving in an emergency !

Financial Manager: Medical treatment can be very expensive these days - and you must be aware of the costs involved. Many patients are hesitant to talk to their doctor about money matters - but this reluctance can prove to be very expensive! 

Communicator: It is important that you be open and honest with your doctor. Ask questions, listen to the answers and take notes. Remember, the only stupid question is the one you don't ask - so don't hesitate to ask! And if you don't understand, the fault is not yours - it just means your doctor is not explaining well.

It’s true that sometimes the language which doctors use seems to be a foreign tongue and to become fluent in this, you will have to put in some effort. Think of it like learning a new language – it can take time, and is hard in the beginning, but becomes easier the more you learn as you starting making sense of its logic and patterns. It’s actually much easier than learning Sanskrit, because the script is the same , and many words are familiar. Paradoxically, the fact that many words are familiar can actually make it more difficult , because this increases the scope for misunderstanding. Thus, for a layman, acute usually means severe, whereas for a doctor, acute usually denotes an emergency. This can be confusing, but if you trust your abilities to learn, the efforts you put in will pay rich dividends, because your doctor’s respect for you will increase manifold !

Health literacy will help you during your medical journey – right from choosing your doctor; making the best use of his expertise; researching your options; understanding medical jargon; to taking care of yourself in hospital and during surgery. A health literate patients is a VIP patient - a very well informed patient  - and that’s that's the best kind of patient to be if you want to get VIP care!

Want to learn more ? 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.

How can I tell if my patient has limited health literacy?

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 4

4 Chap  How can I tell if my patient has limited health literacy ?

While it’s easy to tell if a patient has jaundice, you can’t tell if a patient is health illiterate just by looking. There are many myths about who has limited literacy skills, such as:

•    They have a low IQ and are slow learners
•    They look different from people with high literacy skills
•    Years of schooling correlates with literacy skills
•    They are from ethnic minority populations
•    They will admit that they have limited literacy skills

Doctors often make mistakes when estimating a patient’s health literacy. They may assume poor patients are stupid, or that rich patients understand everything. Both of these stereotypes are incorrect. However, there are clues that can help you know if your patient might need extra help, if you pay attention. For example, if your patients complete their forms incorrectly, or have left many blanks, it may be due to limited literacy skills. Taking medications incorrectly can also be a clue to their lack of understanding of medical terms. Poor communication has many side effects, and your low-literate patients may:

•    Miss appointments frequently
•    Have difficulty complying with treatment or medication instructions
•    Not follow through with tests or referrals to other providers
•    Not read the patient educational materials you provide
•    Forget names of their medications
•    Not be able to explain what a medication is for

Despite these clues, limited health literacy is often a hidden problem. Most people with low literacy skills go undetected by their doctors, because they go to great lengths to hide their literacy problems . They are ashamed and carry a lot of emotional baggage from many years of feeling stupid. This is a very touchy issue for them, and they will often clam up because of humiliation and frustration. Many low-literate patients are surprisingly smart and have figured out ways to hide their limited literacy skills from others by memorising things they have read before or making intelligent guesses that cleverly camouflage their lack of understanding.

It’s also important to remember that even people with proficient literacy skills can fail to understand complex instructions and health information when they are ill; and many patients avoid asking questions so as not to appear stupid , or because they do not want to annoy a busy physician.

One way to assess whether your patients have adequate health literacy skills is to conduct a “brown bag medication review”. Ask your patients to bring in all the medications they take (both prescription and non-prescription) to their next appointment. Ask the patient to name the medications one by one ; explain what each is for ; and how often they take them. You may suspect low literacy skills if the patient struggles to read the label on the bottle or if they pour out the pills in their hand to look at them. Also, while they may have memorised the dosage instructions, such as, “Take 1 pill every 8 hours”, probing questions such as “When was the last time you took a pill?” may give more clues as to how well they really understand these instructions.

There are several formal assessment tools available for use in the clinic, such as the following:

Newest Vital Sign (available at www.NewestVitalSign.org)

Rapid assessment of health literacy in medicine
(more information at: http://www.rcmar.ucla.edu/rcmar_wiki/Literacy_REALM.html)

While these resources can help you assess your patient’s level of health literacy scientifically, their major limitation is that they only give an approximation of reading skills and are incapable of assessing other important aspects of health literacy, such as understanding, motivation and the ability of individuals to access or use information concerning health and healthcare.

Universal Precautions

It’s safest to assume that everyone can have difficulty understanding health information. Universal Precautions are a method of minimising risk for ALL patients, because you do not know which patients have trouble understanding. The idea is similar to taking universal precautions against the transmission of blood borne infectious diseases when providing medical care , because you do not know which patients are HIV or hepatitis positive.

Many healthcare professionals find it challenging to practice Universal Precautions, because they have to change the way they think and talk to their patients. They also may fear they are “dumbing down” the information , or that patients will be insulted by their use of “ simple language”. However, patient surveys have shown this not to be true. All patients prefer simple and clear communication  and plain language resources provide the means to moving up the ladder of health literacy.

In brief, universal precautions include 4 main areas:

1.    Improving spoken communication
2.    Improving written communication
3.    Improving self-management and empowerment
4.    Improving support systems

Improving spoken communication includes using “plain language” and the “teach-back” technique for clear verbal communication. Improving written communication involves selecting, and creating written materials that patients can understand and make use of easily. Improving self-management and empowerment means increasing self-efficacy and self-care , thus improving adherence to treatment. Improving support systems involves collaborating with professionals and organisations inside and outside the healthcare system to help patients carry out the advice of healthcare professionals. We will address each of these issues individually in this book.

To help healthcare practices implement health literacy universal precautions, The Agency for Healthcare Research and Quality has created a Health Literacy Universal Precautions Toolkit (http://www.nchealthliteracy.org/toolkit/) for health professionals. This provides step-by-step instructions for healthcare practices and offers a systematic approach to simplifying medical care and helping patients get the right medical care.

For there to be a solution, the problem must be recognized. This is not an easy task  because illiterate patients are masters at hiding their inability to read – after all, this isn’t something that they want to be advertised. With all of our progress and technology, people are still slipping through the school system unable to read. The educational system has failed them; does the health care system have to as well?

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 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 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.

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

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

Promoting Health Literacy to Put Patients First - Why bother ?

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 1.

Chap 1 . What is Health Literacy? An Overview.


Shreya is an illiterate 30-year old mother. When Shreya’s 4-year old daughter developed earache and fever because of otitis media, her doctor prescribed her an antibiotic, in the form of a syrup.  Shreya promptly poured the medicine in her daughter’s painful ear.

This anecdote may sound amusing, and you may feel sorry for Shreya because she cannot read, but just because you are literate does not mean that you are health literate!  Do you understand the fine print in your health insurance policy ? Can you make sense of your hospital bills ? Do you understand everything your doctors tells you ?

Health literacy is much more than just a measure of the level of knowledge you have about health. It tests your functional skills, and is defined by the US Department of Health and Human Services (2010) as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions for themselves.

It is a common misperception that low health literacy is simply a lack of health knowledge or inadequate reading (literacy) skills. In fact , everyone , regardless of education level, intelligence, or socioeconomic status can experience challenges in understanding complex medical information, especially when undergoing the stress of a serious illness.  While doctors need an MD degree in order to practice medicine, patients also need to learn basic health literacy skills to be able to receive good medical care. For example, after your annual health checkup, you get a file full of medical test reports , filled with daunting scientific terms and numbers  . Do you really know what they mean ? How often have you had questions you wanted to ask your doctor, but were afraid to do so, because you didn’t want to look like a fool ? If so, read on, because  the diagnosis is clear – you suffer from poor health literacy, and this book will help you treat this extremely common condition.

It is important to distinguish health literacy from health education and health communication. Health literacy is the goal; health education is one tool for reaching that goal. Similarly, the terms "health literacy" and "literacy" should not be freely interchanged. Health literacy encompasses more than just the ability to read written materials; it also means understanding the information so that you can take an active role in managing your health.

Health literacy gives you the skills to:

•    Interact confidently with doctors, nurses, and pharmacists
•    Find health information on the Internet
•    Understand different treatment options
•    Understand the concepts of risk and benefits
•    Complete health insurance and medical history forms


In India, the government defines a person as being literate if he can sign his name, but in this day and age, this is grossly inadequate! Literacy refers to the ability to read, write, speak, and solve problems and there is a difference between low literacy, which refers to a limited ability to perform these tasks and illiteracy, which refers to an inability to read or write.

The earliest definitions of health literacy were clinical because they were created by healthcare professionals, and  focussed on the patient’s ability to read and understand the information given to them in a medical context . However, today this has evolved to reflect a broader and more empowering conceptualisation of health literacy. Australian researcher Don Nutbeam (Nutbeam, 1999) argued that the traditional definition of health literacy misses much of the deeper meaning and purpose of literacy for people. Nutbeam outlines a three-level definition expressing health literacy as not simply a measure of reading and writing skills but also as a strategy for empowerment.

• Basic/functional literacy — sufficient basic skills to be able to function effectively in daily life;
• Communicative/interactive literacy — more advanced skills that, together with social skills, can be used to actively participate in healthcare decisions;
• Critical literacy — even more advanced skills which can be applied to critically analyse information and use this to exert greater control over public health for the entire community.

Health literacy is clearly linked to general literacy skills but general literacy skills do not necessarily equip an individual for the complexity of literacy demands in the context of healthcare. Health literacy also incorporates health numeracy , which affects a wide range of skills from checking your blood pressure, tracking your cholesterol levels and counting calories to decision making with regard to risk and benefit. Math skills are required to choose the right health insurance plan , and to make sense of your hospital medical bill these days seems to require an advanced degree in statistics. Numeracy skills are important for doctors as well, who are often surprisingly poor at understanding medical statistics, which affects their ability to apply evidence-based medicine to their  patients.

Health literacy is dynamic, requiring you to discard outdated information and learn new information on an ongoing basis, ad medical science evolves. To reflect this, a recent Canadian Expert Panel adopted the following definition of health literacy:

The ability to access, understand, evaluate and communicate information as a way to promote, maintain and improve health in a variety of settings across the life-course.  Thus, health literacy demands not just the ability to read but the skills of listening, analysing and decision making and the ability to apply these skills in the health context

Both low literacy and illiteracy are serious problems when it comes to health care, because of the risks involved in not understanding your doctor’s orders; or not being able to communicate your symptoms and personal preferences.
Reasons for limited health literacy skills include:
•    Lack of educational opportunity – for example, people who have not completed high school
•    Learning disabilities
•    Cognitive declines in older adults
•    Limited English proficiency ( this is a huge problem in India, where the majority of patient educational materials are still available only in English, even though this a foreign language for most Indians ! )
Even people with advanced literacy skills can be overwhelmed by health information. Medical science develops rapidly, and most of us have read something about our bodies in the past that now seems to be incorrect, based on new scientific information.  Remember when we believed that being out in the cold would give you a cold or flu? Now we know that being indoors is even riskier, because we are exposed to other people’s germs !

Cultural Competency

Health literacy is a multidimensional issue which is  affected by social and cultural factors , because these influence what you expect from your doctor.  A dramatic example of how this affects patients is recounted beautifully in the book, The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures by Anne Fadiman , that chronicles the struggles of a Hmong refugee family from Laos, and their interactions with the health care system in USA. This  book tells the story of Lia, who was diagnosed with severe epilepsy, and the culture conflict that obstructs her treatment because of the dichotomy between the Hmong's perceived spiritual factors and the Americans' perceived scientific factors , and their inability to bridge their cultural gap .

The healthcare world is a culture in itself – one which is foreign to patients. Healthcare professionals are trained for many years within an academic and technical environment that may distance them from local cultural concerns. Doctors have a language all their own, and it may be adapted specifically to their institution or specialty. Bridging the gap between the culture and language of the doctor and patient can be difficult, regardless of their educational level.

It’s interesting to see how the concept of health literacy has emerged from two different roots - as a clinical "risk", or a personal "asset". In the former case, doctors and hospitals are educated about the dangers of poor literacy skills , and this is leading to changes in clinical practice which help illiterate patients navigate the healthcare system. As a refreshing contrast, the concept of health literacy as an asset has its roots in educational research, adult learning, individual empowerment and political activism. This is focused on the development of skills to enable people to exert greater control over their health. A great example of this is how AIDS activists banded together and learned to galvanise a sluggish healthcare system , as a result of which the medical care they received improved dramatically by leaps and bounds.

Health literacy is a complex, multi-faceted issue that requires a multi-disciplinary approach. The term health literacy itself implies a junction, a crossing of two sectors: adult education and health. It is everyone’s problem – which is why it seems to be no one’s problem ! This is a challenge that is well worth tackling, because the rewards are well worth it.  While no one person can do it alone, the good news is that if we all work together, we can have a significant impact. This is a battle worth fighting – not only for our own sakes, but for the sake of our children as well.

Dr Malpani, should I complain about my doctor ?

Every doctor wants to see his patients get better. After all, one of the major reasons people choose to become doctors is that they have a strong urge to heal and help others. Medicine is the ultimate service profession, and because it's a direct one-on-one relationship, good doctors devote a lot of their time and energy in keeping their patients happy.

It also make a lot of business sense to do so. Patients who are happy are the best source of new patients ! Word of mouth marketing is the best was of growing a practise for doctors , and doctors understand the value of this.

This is why happy patients make for happy doctors !

Unfortunately, not every patient is going to do well. Medicines do not always work and the human body can be fickle. This is especially true in IVF cycles, when the outcome of the cycle is always outside the doctor's hand. No matter how good a doctor I am, once I have made the embryos in the IVF lab and transferred them into the uterus, I have no further control as to what will happen. Sadly, most embryos do not become babies, which means IVF cycles are more likely to fail than to succeed.

This is a fact of life, and we do our best to educate and prepare our patients for this possibility. This is why we are transparent; show patients photos of their embryos ( even when things are not going well); and prescribe large doses of Information Therapy, so that patients have realistic expectations of what we can do for them.

Our patients appreciate our efforts , but when an IVF cycle fails , patients are understandably upset. If an IVF cycle fails, the right thing for a smart patient to do is to analyse the cycle together with the doctor. What went wrong ? What went right ? What can we do differently the next time ?

Sadly, not all patients are capable of taking such a mature approach. They are angry and need to vent and a doctor is an easy target ! Some get abusive ( both in real life and online); and others may even get violent. Rather than sit dispassionately with their doctor , they often end up bad-mouthing him and end up damaging a reputation which may have taken a lifetime to earn, because doctors are easy targets. Thanks to the internet, it's become very easy ( too easy , I feel) for patients to post anonymous complaints online about their doctor. While it's important to allow patients mechanism for redressal, I do not think anonymous complaints are the right way to do this. If the patient has a complaint, he should also have the courage to stand up and identify himself, so the doctor can explain what happened.

I have been at the receiving end of anonymous online complaints , and feel betrayed. We pride ourselves on our patient-centric skills. However, even though we spend so much time with our patients, counselling them and educating them, when they say nasty things about us behind our backs, without giving us a chance to provide an explanation , I am angry and upset ( which is one of the reasons I am writing this post ! ) These cowardly complaints are very upsetting. The most sensible thing for me to do is ignore them , but it's hard for me to do this, because I care for my patients, and am unhappy when they are unhappy. It's hard for me to detach myself and not take it personally. I pride myself on my patient-skills and think of myself as being a good doctor. This kind of unfair criticism hurts !

What's worse, this sets up a negative vicious cycle . Doctors who have been abused by angry patients often start becoming angry and resentful themselves. They start practising defensive medicine and distancing themselves from patients, to protect themselves. Also, doctors talk amongst themselves - and what they learn from other doctor's experience is that patients can be vengeful ( for no fault of the doctor's) - and that doctors need to protect themselves from their patients !

It's so tragic that affairs have come to this sorry state . A lot has been written about how the doctor - patient relationship has deteriorated in recent times. While many people are happy to blame greedy doctors for this, unfortunately no one has highlighted the role patients play in damaging the relationship. After all, any relationship is a two-way street - and a doctor who has been sued or abused is no longer going to be the same person he was before the episode.

Unhappy patients create unhappy doctors . What's worse, they often end up creating unhappy patients as well, because unhappy doctors do not take good care of their patients and often end up disrespecting them and providing poor quality care.

The tragedy is that the bad doctors - the ones who are mercenary and uncaring really don't care what their patients think about them. Criticism from an unhappy patient just rolls of their back and they can happily ignore it. Good doctors are hurt when patients are unhappy with them, because they have worked hard in order to get the patient to get better. They feel cheated and let down that the patient has abused them rather than tried to talk to them to resolve the problem. Their attitudes towards the next patient they see hardens - and the doctor-patient relationship starts deteriorating and becoming adversarial !

If you are unhappy with your doctor , please do let him know so he can try to fix the problem. You owe this to your doctor; yourself; and to his future patients ! Of course, if he does not do anything to solve your problem, then it's fair to look for ways of getting back - but never attribute to malice what may have happened because of factors outside anyone's control !