In part two of Logically's interview series with Dr Deepak Kumar, former WHO epidemiologist and current consultant for the CDC, we discuss the ways in which rumours, misconceptions and misinformation around public health outcomes have occurred and spread in India.

Logically: In what ways do you feel that India’s health infrastructure & active system of providing medical care allows misinformation?

Dr Kumar: For some of the neglected tropical diseases, for example, the healthcare worker goes house to house, knocks on doors, provides the tablets. Thus, many people in rural India have the perception that when it comes to health it’s the government’s responsibility to ensure that we live happily and healthy.

On the other side, in India the health infrastructure is very skewed—we're talking about a situation where we need to provide healthcare to 1.3 billion people, and it's not easy at all. The World Health Organisation [WHO] estimates that there are just over one million registered medical doctors. So, if you do simple maths, one doctor is shared between more than 10,000 people in India. Similarly, there is one government bed for more than 2,000 people. There aren’t enough human resources available to provide services to so many people.

Also, the reach of this health service is not uniform. I mean, in many places people have to walk five, six kilometres to seek help from a particular government health facility. In the event that they are very sick or they are having acute problems, they would not want to choose that option. So naturally they tend to use whatever resources they have available in the vicinity, and this is a natural reaction.

This has now led to a situation in India where there is a lot of quackery—many unqualified people providing medical services. In fact, there was one report stating that of the one million registered medical doctors in India, only twenty percent of them are available in the government sector. The other 80 percent are available only in the private sector.

One solution is not going to fit everybody. The Indian government...should ensure that those who are unqualified but who are already providing services are at least utilised to support the national health distributors.

Of all the people providing health services in India, be it rural or urban, more than fifty percent of them did not have a medical education. More than fifty percent. More than thirty percent of those healthcare providers did not even pass secondary school.

Now, the Indian government and public health system are grappling with the situation, but they cannot wish them away. Simply put, this is because if one day they decided to force quacks out, who would take care of the people actually falling sick at home? The government facility won’t go there, they cannot reach everyone uniformly. So the Indian government should also think about how to generalise this resource, if not regularise it.

They couldn't allow any random person to start giving health services, but at least what they can do is develop a small, tailor-made training programme to build that capacity. Something enabling these quacks to participate in the national health programmes, to learn to detect communicable and noncommunicable disease and refer them, you see? There can simultaneously be enforcements and laws preventing them from administering important services, like injecting medicines, or setting up IVs. They should not be allowed to do surgical operations, which they are—many of them are doing surgeries. So to your question about health participation, about health-seeking, it's very, very low.

One solution is not going to fit everybody. The Indian government needs to develop a system that enables community participation by educating people. It should build confidence in the government system. It should ensure that those who are unqualified but who are already providing services are at least utilised to support the national health distributors.

Logically: To what extent do you think that local variability—things like different regional cultures, different notions of what it means to be healthy, different traditions surrounding health practices—contributes to double standards and misconceptions regarding health?

Dr Kumar: See in response to this question, I would say that there is no particular agreed level of miscommunication or misconception. Take for reference point the fact that there are Indian states with almost 100 percent literacy level, like Kerala.

Kerala is one of the states in India which has a very high literacy level, and because of people’s good educational status there is a culture of seeking medical help, a generation which has absorbed the reflex to demand healthcare. There's a culture of social audit. If people in the community are sick but are not seeking help from the right people, then their community, their neighbours who are equally educated would at least question them: "Why don't you take this medicine? Why don’t you go to that doctor?” Or: “There is a good hospital. There is a medical college available and there is a referral system available.” At least they're educated, so there are far fewer chances of misunderstanding or incorrect perceptions about health.

We can talk about other states like Bihar, Uttar Pradesh, Orissa, Chhattisgarh or West Bengal. In some of these states, the rural population is large, and the literacy level hasn't reached the desired eighty percent. So because there are many different people living there, with their own cultural practices, their own belief systems, with medicines they have seen their grandfathers and forefathers take, out of habit they seek help from Mr. X in a particular village, even though this person is not necessarily a doctor.

There are people in the community who, rather than going to a health practitioner, will always go to temples to seek help, because they have this belief that if they go to temples, the particular deity or goddess will bless them with good health. So no matter how sick the child or particular family member is, they will first tend to go there. And where does that lead? It leads to delayed access to the right health facilities. Consequently, it’s the doctors administering the final health services who are blamed for problems, because their practices are so costly that they’re a last resort.

Misconceptions exist at varying levels of intensity in India. Some misconceptions are due to their culture, some due to poor education systems. There are situations where the government did not educate people in a timely fashion, or provide them with information. Now, the government’s efforts have also been a little weak in the areas of Information Education and Communications: IEC. In every national health programme in India, there is a component of IEC.

For example if you need to build community participation, you need to ensure that the community is engaged, you need to advocate among the people. Each chapter treats a topic, with suggestions like: “You need to use the local mic; you need to do drum beating; you need to announce any programs to local print media, or utilise the local cable network.” Those kind of suggestions are there, but whether they are implemented, and how much, is absolutely variable.  

If administrations are in campaign mode, you will see advertisements, you will see newspapers showing that information and educating people, but this is not a perennial activity. This is not a regular effort. There is no independent cell which audits whether IEC efforts have been carried out optimally or not, and because of these various reasons, misconceptions keep happening. But to say that misperceptions occur only because of one reason would not be right.

Logically: Have you heard of any particularly significant cases of misinformation, or rumours around public health?  

Dr Kumar: I’ve worked for a long period with the WHO in the area of immunisation, and also in neglected tropical diseases, so I have two examples. From the point of view of immunisation, I remember when we used to do field work—when the children got vaccinated, you could see that it caused at least some level of pain. The constitution of vaccines is such that one out of every several thousand children vaccinated will develop a fever—this is a natural thing that subsides after one or two days.

Now, the community wouldn't understand this, because if the healthcare provider, the ASHA [Accredited Social Healthcare Activist], or the ANM [Auxiliary Nurse Midwife] that is providing that services does not tell them that: "Once I've given this injection, there is a chance that your child may end up with three or four side effects, but you don't have to worry. If there is an issue you should come back to us, and I will share my contact number with you.” So this is a weak link.

I've seen many community members not participating in immunisation due to this. They say vaccination is stupid thing, that: “Vaccination is going to harm my children, because in the past, when so-and-so got their child vaccinated, they got a fever.” So we had to deal with community members in villages and educate them when they refused.

The direction is the issue, the persistence is the issue, the tailoring is the issue, the monitoring and evaluation is the issue, the data is the issue, the surveillance system for the disease and the participation of communities are the issues.

From the point of view of polio, we know that India eradicated polio in 2014, along with ten other Southeast Asian countries. Before that, whenever there was a polio campaign in a village, people used to say: “This is part of some agenda.” There were pockets of the community which used to have hardcore refusals. They would say: "Don’t you dare give drops to my children because of X reason.” Some of them used to say that: "This is a national drive from the government to control the population of the community, so they mixed something with the vaccines. We will not allow our children to receive vaccines.” We had to educate them. There were community members that used to completely refuse, saying it was because their religion didn’t allow the vaccine. So when we talk about India reaching eradication, we had come across all these situations.

Coming from the perspective of neglected tropical diseases, I was recently talking about a disease called lymphatic filariasis— it is the second most debilitating disease in the world. It leads to permanent disability, in the form of lymphedema, elephantiasis, hydrocele, and so on and so forth.

If two tablets are given to a community member every year, just once a year for five years, they would get rid of this problem forever. And would you believe, India has been implementing this program since 2004. Now been 14-plus years, and they have not reached the desired level of impact. Why? Because the community members won't take the pills. They will understand the importance of the disease, but they will say: "This drug is not important for us.”

They may accept the drug when the health broker is forcing them, but they will just keep it, saying: "Oh, we haven’t eaten, so we’ll just have food and take the pill later.” The actual compliance and drug consumption in India is between 20 percent and 30 percent, whereas the target is more than 85 percent among the eligible population. Because of misconceptions, people not participating, weak government initiatives, weak frameworks, weak implementation, weak utilisation of information technology—or looking from the bottom up, because of poor educational situations, because of culture, because of all of these things, the actual impact of the programme does not match up with the level of effort that the government is making.

Usually, governmental effort is not an issue. The direction is the issue, the persistence is the issue, the tailoring is the issue, the monitoring and evaluation is the issue, the data is the issue, the surveillance system for the disease and the participation of communities are the issues.

Logically: Do you notice periods in time when misinformation surges, or is it a constant thing?

Dr Kumar: The chances of miscommunication usually increase after disasters in India. So in 2001, there was an earthquake. And usually there is a perennial flood in some of the states in India—the northern parts of the West Bengal, Bihar, some pockets of Uttar Pradesh, and especially those bordering with Nepal. Then there is the issue of tsunamis happening in Kerala and some other pockets.

So when such disasters happen in India, in the following weeks there is a surge of communication from all the social media channels. Facebook will flood, WhatsApp will flood, and then Twitter will flood. And whether you want to participate or not, you will be forced to see those messages on your mobile handset, or your television. In some ways, it is the responsibility of the media to ensure that the right perspective is shared with community members. Usually the media outlets, because of their agendas, want to highlight news stories which catch more attention.

So they do not take into account the positive efforts that are also being made. For example, if there is a flood, they will just show flood, flood, flood—ten times. They won’t show the consequences of the flood, the health risks arising from the flood, the suggestions that need to be endorsed and the measures that need to be taken by the people who are grappling with the situation. They will just show the flood. So, if you are surviving in that flood, in that situation, and want to switch on the television for some guidance, what would you see? You would see flood, flood, flood. When and how would you get the guidance to survive?

The people on the receiving end—the least educated—like any village people in the world they're simple people. They need to be told: “Look, you go and walk ten feet straight and then you turn right, then you will reach your destination.” They would do that, they are happy to do that, but only when they are told—and so there have been miscommunications. For example, there was a diphtheria outbreak in Kerala in 2016, with more than 200 cases. Diphtheria is a vaccine-preventable disease, you see. It can affect anybody, but usually it affects children. In Kerala, where there is a higher education status and a good literacy rate,  there was still a diphtheria outbreak.

When we investigated why a state with very good infrastructure, very good human resources, and a very good education system would have diphtheria outbreak, we understood that there are pockets of people, even in those high performing states, where people live with misconceptions through the generations. They have not sought vaccination and they have not let their children be vaccinated.

Now, Kerala could easily manage that outbreak because of its strength. Now, imagine the same situation happening in a weaker state—what would have happened, or could be happening right now? So, I have personally seen that there is a surge of miscommunication post-disaster in India, and somehow people, including the Indian and international media, try to get more involved.

Logically: Which technological platforms do you think drive the most misconceptions?

Dr Kumar: I think—and this is in my personal experience—I think that WhatsApp is such a convenient technology these days, it is readily available to everyone. Everyone feels open to to giving suggestions, whether they are wanted or not. In the event of any kind of health crisis, my friends and family members send me messages about this thing that is happening, and sometimes they suggest something which doesn’t make sense.

I think that WhatsApp, as of today in India, has the greatest potential for bringing positive and desired changes in avoiding miscommunication and bringing positive health outcomes.

I don't know how much, or which program has driven the most misunderstanding. I also don't know whether that has impacted health outcomes or not, but I certainly know that WhatsApp is often misused by the community at large. It has advantages and disadvantages. It shows that this route is readily available to the community. It shows that people are actively seeking and participating in WhatsApp. This means that if there is a system, or a channel which can ensure that these communications are passed on through WhatsApp appropriately, in such a manner that they multiply in a positive way, then I think that WhatsApp, as of today in India, has the greatest potential for bringing positive and desired changes in avoiding miscommunication and bringing positive health outcomes. This is my take.

I also think that some of the social media platforms, particularly Twitter, are still yet to be understood by a lot of people in the Indian context. Only a handful people are on Twitter. It's such a powerful tool—more powerful than WhatsApp, but people don't know. To me, it’s not easy to educate people on which platform to use. To me, the right platform is whichever one that’s being used right there and then. We should not wait for a new platform to penetrate to a desired level and then build on our intervention on that. This is not the right test approach. The right test approach would be to use the current strength of WhatsApp, to ensure that the right message is passed on.

You can find the third and final part of our interview with Dr Kumar, 'Tackling air pollution in India', here.

This article's header image is by Christian Wiediger from Unsplash.