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
“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
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