Although health literacy is a problem worldwide, it needs to be addressed urgently in India. Ours is the second-most populated country in the world, with a population of 1.2 billion, only slightly behind China. Lack of health literacy poses a great threat to our nation’s economic stability as health care expenditures are on the rise, along with an expanding population. As a result of overpopulation, access to quality health care and reliable health information can be difficult to come by. India also has an unusually high rate of illiteracy and poverty in both urban and rural areas, both of which contribute to low rates of health literacy.
It’s not only the general public who suffer from a lack of accurate health information; a report from the World Bank stated, “a detailed survey of the knowledge of medical practitioners for treating five common conditions in Delhi found that the average doctor in a public primary health centre has around a 50-50 chance of recommending a harmful treatment.” No wonder that people are wary of the medical system.
The unequal status of women in Indian society also leads to a lack of health literacy. Learning has traditionally not been encouraged for women and as one parent in Uttar Pradesh put it some years ago, “There is no point teaching a girl; she marries and goes away. Why waste money on sending her to school? ” Many studies have shown that the greater the education and social status of women in any given society, the better the level of the entire society’s health. Women are still the primary caretakers across all cultures. If women are not empowered and educated to take care of their family’s health and make the right medical decisions, it is far more likely that greater rates of illness will result.
India is one of the most difficult places in the world to be a child. Almost half of all Indian children under age 5 are malnourished, and a fifth of worldwide deaths in children under age 5 and over 25% of neonatal deaths (occurring in the first month of life) occur in India alone.
Although India has embraced modern technology in a big way, technological advances are still far from being implemented in many states. While it is encouraging that over 100 million people in India use the Internet, with 70% of them accessing health information online, this is still only a fraction of the population.
What is remarkable about India is that there is such a sharp contrast between the haves and the have-nots. Health care facilities in some cities are so good that they rival that of the most developed nations (for example, Mumbai has more MRI scanners than London). However, there are still many states with health care that is regarded as being among the worst in the world. Though considerable progress has been made in the past few decades to improve the availability of health services, it has not necessarily led to an increase in their utilisation.
Why is it so much harder to promote health literacy in India?
The number one cause of poverty and illness in India is illiteracy. A whopping 41% of women and 18% of men 15-49 years of age have never been to school. With such a large percentage of the population unable to read and understand the simplest of sentences, even in their own regional language (of which there are several hundreds, which adds to the complexity of the problem), delivering accurate health is a daunting task. If a patient with tuberculosis (TB) is not able to understand why he needs to continue taking his medications for at least 6 months, he is not likely to comply with his doctor’s medical advice. This high drop out rate leads to the development of multi-drug resistant (MDR) TB.
The comparatively low rate of female literacy has had also a significant impact on family planning and on the high rates of infant and maternal mortality. Many uneducated women are unaware of the types and amounts of nutrition that are important for their child to receive, which contributes to the highest rate of childhood malnourishment in the world. Even many of the workers at the public health centres who are specifically trained to teach women about how to feed their children are not aware of what constitutes good and adequate nutrition, as many themselves are illiterate.
Despite being the world’s fourth largest economy, many parts of India still suffer from distressingly high rates of poverty. Over 900 million people live on less than Rs 100 per day.
The Indian government currently devotes a mere 1% of its GDP to health care costs, much less than what many poor African countries spend. The government has pledged to raise that amount to 2% to 3% of GDP, but it still falls far short of what most developed countries spend on health care, ranging from approximately 6% to 8%.
Even if people are educated about how best to eat and care for their health, many are unable to do so through lack of ability to pay for the simplest foods and medicines. People who do not even have enough money to eat are not likely to have either the capacity or desire to learn about health issues. This becomes a chicken and egg issue, where poverty contributes to poor health literacy, which in turn leads to even poorer health.
Inequality, discrimination and traditional culture
Another barrier to achieving health literacy in India is the marked disparity that exists in social status. While making gradual improvements, India still lags far behind the rest of the world in social issues such as gender equality and non-discrimination against people from certain walks of life. Women and people from the Scheduled Tribes (ST), Scheduled Castes (SC) and Other Backward Classes (OBC) are effectively viewed as second-class citizens and often receive discriminatory treatment.
Many people still see women’s primary role as being to marry and have children. The median age of marriage for women in India is 17.2 years, despite 18 years being the legal minimum age. In some areas women are barely past puberty when they are married. Not only is this damaging to the woman’s mental and physical health, it can also be harmful for her children, who often suffer from intrauterine growth retardation.
Studies have shown that spacing births at least three years apart reduces the risk of infant mortality, one of the most serious problems in India. Nevertheless, many women are not knowledgeable about, or have no access to, family planning. The government spends a lot of money promoting family planning in the media, but a lot of this is wasted because the services of experts in social marketing and advertising are not utilised effectively. The Health Ministry still uses age-old boring tools to try to educate the public – and they just do not work anymore.
Distrust of the medical system in India
Public healthcare services in India suffer from a severe lack of adequately trained staff, and given the small amount of money that India spends on health care, this is not surprising.
A survey on health behaviour in India (Jain, Nandan, and Misra, 2006) was quite telling: Rather than see a physician, most young unmarried women will discuss their health problems with their mothers, elder sisters, or married women in the neighbourhood; married women will discuss their health problems with other women in the village and most often try a herbal or home remedy suggested by these women or will see a local indigenous medical practitioner (RMP) rather than go to a medical centre.
It is only when their problem gets worse that they ask about the possibility of seeing a doctor, though even then they almost never discuss their medical issues with their husbands. Most men discuss their health issues with other men in their peer group and less than half consult with their wives, as they feel their wives could neither treat the problem nor did they have sufficient knowledge to be able to give their husbands good advice.
The elder male members of the family were almost universally the ones who made the decision as to when to seek professional medical care, particularly when it involved a major expenditure. Occasionally an elder female member of the family could make these decisions, but it was rare. Even in the case of illness in the women or children of the family, female members of the family are generally required to follow the advice of their mother-in-law, husband or elder family members before seeking professional medical treatment.
If home treatment has not worked and the condition becomes aggravated, then the help of a practitioner from a nearby clinic is sought, irrespective of that clinician’s qualifications. Only in cases of severe illness will they usually seek treatment in a certified medical facility in a more distant town or city.
The socioeconomic status of the family tends to decide which type of practitioner is sought for treating illness. The poor usually rely on either registered medical workers near them or on local indigenous practitioners, as they are likely to give less expensive treatment and occasionally provide medicines on credit. While some families will seek treatment at government health centres, which are usually less expensive, wealthier families go to private health care facilities and doctors for their treatment.
There is a reluctance to utilise Primary Health Centres (PHC) and their sub-centres due to a number of factors, including long waiting times, long distances from home and unsuitable opening hours. In addition, many village women are unable to go to the clinic without being accompanied by a male member of the family or an elderly female relative.
One of the top reasons people don’t visit PHCs is the lack of doctors. In fact, 45 percent of the time, NO doctor is available, and when someone has travelled many miles and at great expense to see a doctor who is not there, it does not encourage them to return, and their experience is likely to be shared with other members of the family and village, leading to an even lesser likelihood of people seeking treatment from health centres.
Furthermore, people report that the health centres have inadequate facilities (most do not even have electricity); and more often than not, they do not have any cost-free drugs on hand. Instead, most patients are given a prescription for medicines they need to purchase on the open market at great expense.
The health centre staff is often unmotivated and lacking in compassion, with many refusing to treat poor patients.
Despite the cost, most people prefer using private practitioners over government-run health services due to the greater ease of accessibility, and because private doctors were “more concerned about their problems.”
Special challenges: Scheduled Tribes, rural villages and slums
Approximately 72% of the Indian population lives in a rural area, and over 84 million people are members of a Scheduled Tribe. Tribal populations suffer from more severe and longer-lasting illnesses than that of the general population due to a number of factors. Poverty is one of the primary causes, with Scheduled Tribes accounting for 25% of the country’s poorest people.
Access to remote villages is limited by bad roads and by poor (and expensive) transportation options. Medical facilities, with staff who can be insensitive or discriminatory toward Tribal members, are often a significant distance from many of these rural villages and most Tribal people cannot afford to get to them; even if they had the money for transportation, most could not afford the cost of services or the drugs prescribed, all of which must be paid for out-of-pocket.
Malnutrition is rife, and problems accessing potable water, along with lack of sanitation and understanding of the importance of personal hygiene leads to these populations having greater vulnerability to disease.
India’s slums do not fare a great deal better. According to researcher Shradda Agrawal, the people living in these slums suffer from “poor utilisation of the reproductive child health services provided by the government, lack of awareness regarding birth spacing, and very low use of contraceptives.” Agrawal goes on to say, “Literacy and age at marriage are not raised in spite of laws made by the government,” leading to an exacerbation of the problem of overcrowding and lack of resources that contribute to poverty, illiteracy and ill health.
All is not doom and gloom! There are some outstanding success stories that serve as a beacon of hope.
The Comprehensive Rural Health Project run by Dr Arole at Jamkhed (@ http://crhpjamkhed.org) is an excellent model. They have made extensive use of the Village Health Worker (VHW), usually an illiterate and low caste woman, who serves as the key change agent for a comprehensive approach to health improvement. Selected by the communities themselves, the VHWs not only act as health workers, but also mobilise their communities to achieve better sanitation and hygiene, family planning, women and child nutrition and women’s economic rights.
An awe-inspiring example is the work done by the Amte family in Anandwan (@ http://www.anandwan.in/). At Anandwan, human beings (who also happen to be leprosy patients) enter the development process as responsible "subjects" - those who know and act, in contrast to "objects" which are known and acted upon. By helping them to become economically independent and stand on their own feet, they have become productive healthy members of society, rather than remain as unhealthy burdens.
Dr Abhay Bang’s outstanding work at SEARCH, Society for Education, Action and Research in Community Health, Gadchiroli, India shows what can be achieved when we have the humility to look at the world through an illiterate person’s eyes. He has sent infant mortality rates plummeting in one of the most poverty-stricken areas of the world by training a group of local women (Traditional Birth Attendants (TBAs), known as arogyadoots, which means health messengers) in the basics of neonatal care. These illiterate women were not able to diagnose pneumonia in children reliably because they were unable to use watches to count the breathing rates in infants. To overcome this problem, Dr Bang devised a Breath Counter, which uses an abacus for counting and an hourglass for timing. One bead of the abacus is moved for every ten breaths taken by the child; if the red bead is moved before the sand runs out in the hourglass, pneumonia is diagnosed. This is a great example of the clever use of appropriate technology!
Since 2000 the Tathapi Trust has been developing the concept of "Body Literacy". They have created workbooks for school children from the age of 10-12 years, which allow them to explore issues around sexuality and growing up. Each book also includes a section on how to stay safe from abuse, including child sexual abuse. The purpose of the Body Literacy workbooks is to encourage children to access useful information about their body, so they can learn to make their own decisions about their health. The workbooks enable teachers and parents to address sexuality issues in a non-threatening way and enable children to develop a healthy concept of their own body and mind.
The government has tried to learn from these projects. The National Rural Health Mission launched on 12th April 2005 created a corps of female health volunteers, appropriately named “Accredited Social Health Activist” (ASHA, which stands for hope) in each village (@ http://www.mohfw.nic.in/NRHM/asha.htm). These ASHAs act as a ‘bridge’ between the rural people and health care providers. ASHAs are selected by the community, from within the community. They work on a voluntary basis, although compensation is provided to them for specific activities and services. They act as change agents, and are able to mobilise better and more rational health services in the villages in which they live.
While there are other projects that have helped to bring health care to those who cannot travel to a health centre, most of these remain pilot projects – and the government has failed miserably in scaling them up and making them sustainable. If we cannot bring Mohammed to the mountain, we need to bring the mountain to Mohammed, and telemedicine is one of the most efficient ways to bring health care to rural villages. There are now more than 400 telemedicine platforms across the country, which allow for people in remote villages to consult with a doctor by video for only 50 rupees. Many hospitals in India have access to the best of modern Western medicine and mobile health initiatives in the form of village resource centres (VRC) are being established to reach those in the farthest corners of the country.
Today, low health literacy is a threat to the health and well-being of Indians - and to the health and well-being of the Indian healthcare system. A health-literate India would be a richer and more productive country – and if we want to become a developed country, this is one of the first hurdles we need to cross.
A health-literate India would be a society in which everyone is able to get safe high quality health care because
• everyone has the opportunity to use reliable, understandable information that could make a difference in their overall well-being
• health and science content would be basic components of school curricula,
• people would be able to accurately assess the credibility of health information presented by the media
• public health alerts are presented in terms so that people can take needed action
• the cultural contexts of diverse peoples are integrated into all health information
• doctors communicate clearly during all interactions with their patients, using everyday vocabulary and there is ample time for discussions between patients and doctors.
Some ask: can we afford to do this? The question should be - Can we afford not to? If we think literacy is expensive, let’s not forget that ignorance (in terms of preventable diseases and premature deaths) costs us a hundred times more. The sad truth is that the Indian government has failed miserably in delivering healthcare. It’s shameful that there is more reliable health information in Punjabi and Gujarati on the Internet on Canadian and UK government websites than on Indian websites – even though we are considered to be the IT powerhouse of the world. This is a sad commentary on our priorities! Fortunately, socially responsible individuals are now trying to bridge this gap, and JASCAP has done some great work in translating patient educational materials on cancer into Indian regional languages. These can be downloaded free at www.jascap.org.
This failure of the government to meet the healthcare needs of the poor represents a huge opportunity for clever entrepreneurs who can devise home-grown cost effective solutions to provide healthcare services to the millions of Indians who live on the bottom of the pyramid.
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 12 from that book