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 iswww.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.