In November 2018, Logically sat down with Dr Deepak Kumar, a former WHO epidemiologist and current consultant at CDC-TEPHINET. We discussed the kinds of misinformation currently affecting public health outcomes in India, and considered how communities and institutions might find solutions. In this first part of the interview, we look at the benefits and risks involved when making communication the core of epidemiological programmes.

Logically: So what do you feel are some of the key characteristics of the Indian public health space?

Dr Kumar: In 1947, when India got independence, the infant mortality rate was more than 200 [out of 1000 births]. And back then, India had a population around one fourth what it is now - 1.3 billion.

In these last seventy years, I would say India’s public health scenario has broadened and widened to capture mostly communicable diseases. Until two decades ago, many efforts were made through various public health initiatives to control and mitigate the communicable risk burdening communities in India—most people in India were dying because of communicable diseases. Now India is dealing with another challenge: non-communicable diseases. Because awareness of them came late, the Indian public health system has so far not been able to adapt itself to handle the non-communicable disease burden.

Currently, India’s public health workers are in a situation where they need to accelerate their efforts to handle non-communicable diseases. More than sixty percent of people die from non-communicable disease. India needs to decide whether she wants to focus continually on communicable diseases, or whether she also wants to look into non-communicable ones.

Another dimension to the public health space is the evolving road. Now, we talk about a concept called Global Village, but I think this concept is less influenced by travel these days, and more influenced by the simple mobile handsets in people's hands. You might be amazed to hear this, but of the 1.3 billion people in India more than sixty percent have got a handset with them—not necessarily a smartphone, but at least they have a communicable device.

However the Indian public health system has not tailored itself so as to completely harness this potential, although recently this technology has been used for early warning signals. Particularly in the wake of some disasters, the government has used these mobile technologies—but these are only piecemeal efforts. As such, there is no policy, there are no guidelines which talk about how to effectively utilise information technology to support public health in India.

Logically: When you think of how communication around public health has occurred in India—the programmes, the awareness raising, even how Indians speak to one another about health issues—what are some of the most salient characteristics?

Dr Kumar: Health is a subject which influences a community and people living in the community. So when we talk about communication, when we talk about technology being used to help improve the health of the community as well as the individual, there are multiple dimensions. There’s interpersonal communication: whether the technology has helped people build on interpersonal communication, and allow people to talk more about health issues.

There’s also whether the government is talking about health to these people. And finally, the third dimension is whether there is a feedback system, or a translation of concerns, from the community to the government. Whether they are able to say to the government that —“These are our issues and you need to help us with the priority issues.”

First we look at when the government wants to talk about health to people. We need to understand that in India, we're not talking about one country. It is one country, definitely, but it is comprised of twenty-nine states and seven unit territories, and if you go in these states and unit territories, you’ll find people with different language skills, different understandings, different educational statuses, different perceptions about health, different health-seeking behaviours, different belief systems... These states and unit territories have different health infrastructures, different resources available at a grassroots level or in tertiary and secondary hospitals.

We need to understand whether the government has utilised technological platforms to help people improve their health. I would say it's completely variable. If you live in metropolitan cities or in urban areas, you might see people utilising these platforms effectively to communicate. However, rural India comprises around seventy percent of Indian population, which is 1.3 billion—one-sixth of the world. So, when we're talking about whether the government has been able to utilise this platform, it's often a one-way process, because even if the government uses the media channels, the standard print medias, it is not necessarily reaching the people for whom it matters most.

India does not have tailor-made programmes for communication, education and information. There are state-specific initiatives—for instance if the central government provides advisories, then the states are supposed to tailor-make programmes according to their own need. States will change the language and ensure that the available resources for communications are used. However, this is very, very, rare. So if you ask me whether this dimension has fully been utilised, no.

Now, coming to interpersonal community: talking to each other using these platforms. While I’ve said that more than sixty percent of people have phones, these aren’t necessarily smartphones. Not many of them use the phones beyond the purpose of calling. So if you were to ask whether these technological advancements helped them make better decisions about health, I’d argue the answer is: not up to the intended level.

So we are still struggling—there is an issue of network, of availability of correct information, of dialect. Suppose if the central government wants to pass on a positive message about health, let's say about family planning, it might not be fully understood by over 50 percent of Indian population because of the language barrier. So you need to plan for multiple languages; India has more than thirty languages, not to mention local dialects which further complicate the situation.

The technology is available, but there is no constructive framework at national or state level to provide standardised guidance on how to use these technologies in all health agendas. HIV programmes might use this information technology a little more at one stage, the RNTCP [Revised National Tuberculosis Control Programme] might also be similarly using it, so might the family planning programme. But what about neglected tropical diseases? What about lymphatic filariasis? What about Kala-Azar disease? What about snake bites? What about rabies? These diseases are not only limited to one particular geography in India, they are dispersed, and sadly they affect mostly rural, poor and underprivileged people.

The weakest link is getting communities to use the same technological route to say whether health interventions have had a positive impact on them, and whether they’ve also been able to participate, to demand care. That is a very, very weak link in India, and it’s largely limited to people who reside in urban areas where they are able to do so—at least through social media like WhatsApp, Facebook, Twitter or other social messaging platforms. But that space is limited to only a handful of people, not to any common Indian.

Logically: Do you find that there’s anybody deliberately trying to manipulate the public discourse?

Dr Kumar: The problem that we are grappling with right now is how to design a framework which can provide uniform guidance not only to the states, but also the unit territories—and then implement it. A framework which can provide tailor-made interventions for both urban and rural areas; which can muscle through this problem of dialect and local variability in India.

One size will not fit all. If the central government said that, “We have a particular website where we send communication and advisories to communities,” it would not actually help because few people look at websites, right?

Logically: So it’s more of a structural challenge.

Dr Kumar: It's a design challenge. It's an implementation challenge. It's a challenge which is very specific to the Indian subcontinent. And I tell you, lately the Indian government has realised this issue. They’re building blocks gradually. They may not be able to compete with the developed nations as of today, where there are at least some advantages.

Let's talk about Germany. In Germany we’d assume that, if a message is delivered from the highest levels, there is a high likelihood that it would be perceived uniformly and would percolate uniformly across all the provinces. But in India, it’s not like that. In India not necessarily everybody has a television set at home; not necessarily everyone has much print media at home. And those who matter to us - those people who are most vulnerable and underprivileged are the ones who usually won’t have access to these facilities.

Logically: So, how do those underprivileged demographics get information concerning health?

Dr Kumar: There are two fundamental mechanisms in science which help medical infrastructures to provide health services: one is active and the other passive. Through the passive system, the concerned community or person participates equally and spontaneously, so as to seek healthcare out. However, in India it’s usually the health providers doing the seeking which sadly makes delivering healthcare an active process.

Why is that? Because the educational level in India is still very poor. Many, many people in India—I would say thirty to forty percent—are still uneducated. Perhaps they know how to write, but not how to read. And because they work to survive daily challenges, the health agenda is never in their mind. It’s never a priority for them. For them the priority is to earn money and get bread; to ensure that their kids and family members have adequate food.

On the other hand we might talk about a programme called the National Rural Health Mission, an umbrella programme designed in April 2005 and recently renamed the National Health Mission. It was the government’s plan to insure the distribution of all the different programmes for non-communicable health disorders, particularly focusing on Maternal Newborn Child and Adolescent Health.

So under this programme, there are health workers, then states and districts; then under the districts, we have blocks, and under the blocks, community health centres and preferred health centres. That’s how the structure goes. Interestingly, health is not a centralised subject but a state subject in India, unlike many countries in the world. Which means it is the state that decides whether they prioritise one activity over another—they may have their own priority.

Many kinds of healthcare workers exist in India; for example, there's a person called ASHA, A-S-H-A. And the full form of it is Accredited Social Health Activist. You can find more on the internet. An ASHA is a local female, selected from a population of around 1,000 in the village and who is a little bit more educated, comparatively, schooled up to year 8 or year 10. People nominate this person, saying “This lady can represent us and deliver the health service.” And that person becomes the final link for delivering all the different health programmes.

All the health programmes are mostly delivered through this lady at rural level. Let's talk about a programme called immunisation (vaccination). When it comes to immunisation, she's the one who goes door to door asking people whether there are any newborns or children less than five years old present. She registers those people and provides this information to the nearest peripheral health centre—PHC. And then the ANM (or Auxiliary Nurse Midwife) goes from the PHC to the particular village on a scheduled date and vaccinates the children.

The entire effort of health service provision has been active, not passive in the sense of based on people’s demand, which has led to a situation in India where most people, particularly in rural areas, perceive health as a package which it is the government’s responsibility to deliver to their home, to their doors. This is mostly because the government has put so much active effort into the field of immunisation, and provides house to house services.

Logically: What are your insights on different policy approaches? Do you feel like there is space for either technological platforms, or perhaps civil society—alternative sectors—to intervene in the public health discourse?

Dr Kumar: My understanding is that communities largely do not participate in public health. There are only certain aspects of public health, certain diseases or certain agendas, for which there is a more active effort. You see that effort in maternal newborn child and adolescent health issues, where a lot of household door-to-door advocacy has been done in the last decades. If you go to any random village in India and ask them, “Do you know any health programmes in India?”, they would say vaccination. However, if you ask them, “Does anybody in your house have tuberculosis?”, they would say, “Yeah, my uncle has tuberculosis.” “Okay, what programme is run for controlling tuberculosis?” They wouldn't be able to answer.

You could randomly ask these guys: “Do you know about the polio programme? He would say “Yes, I know polio programme.” But ask them about road safety programmes, about iodine deficiency programmes, they wouldn't be able to answer you. In India, we have only been able to penetrate to the community level for a few programmes.

And that is that is okay too, because not every programme needs door to door visits. But there are certain programmes which require door to door visits, and that still needs addressing. And non-communicable diseases are a big upcoming issue. How would a common man know that he has diabetes unless and until he understands the science of diabetes, unless he understands the symptoms. He needs to be educated and communicated to at a community level. But the discourse is either variable, or not happening.

Also, discourse on non-communicable diseases is only limited to urban settings, not necessarily in rural areas. So there's a huge skewedness.

Logically: What is one programme which you thought was extremely successful in its communication, and one which you considered a failure?

Dr Kumar: Are you fully aware of all the positive initiatives undertaken in India in the wake of polio eradication programme?

Logically: No, tell us more.

Dr Kumar: Okay. So I need to tell you a little bit [about] polio. So as I told you, in March 2014, India, along with 10 Southeast Asian countries, was declared polio-free. Before that, and since time immemorial, India had been one of the highest polio-endemic countries in the world. There was a time when many technical global experts said that India would be the last country to eradicate polio.

One of the best things that happened was the branding of the programme, number one. You know Amitabh Bachchan? Okay, so he's like John Travolta, sort of. Not exactly, but he's the most popular cinema artist in India and he associated himself with this Polio Eradication programme. Even if you asked a common person across any part of India, “Who is Amitabh Bachchan?”, they would know. Even despite this dialect issue, they would know this guy. So the strategists used Amitabh Bachchan to advocate for this programme as a brand ambassador. Due to which community members accepted it easily—thinking “Yeah, if this guy is saying it, it’s got to be a good thing.”

And he was brand ambassador for maybe fifteen, twenty years consecutively. Every year whenever there used to be campaigns, he would come with a new video, a new message, a new style of advocating, and this message was very good, so much so that if you asked people about the polio campaign they would always remember, without question. Some organisations like UNICEF played a critical role in this programme, by supporting the advocacy and building the right environment, including political engagement, right tone of conversation, right messaging style, posters, publicity.

And there was a polio eradication programme sign on almost every street, in every village. The polio campaign still happens every year, to mitigate the risk of the polio virus being imported from other countries in the world. But in those days when I was participating, you could see people queuing to get the children vaccinated. On top of that, the government health facility would station a booth to provide vaccines to all the people actively advised to come there on a particular date and time.

But the government didn't finish there. They went house to house to ask, “Look, there was a booth, did you get the vaccine for your children?” You say “No, I was busy”— “Okay, so now you take it.” And if they resisted, then there was a system to handle that refusal: a local influencer would be called, as well as a local political person. The family would be given 360-degree guidance and be told that “This vaccine is the most important thing for your child right now.” They would finally succumb to the advocacy and let the children receive that vaccine.

This is the level of effort required, with microscopically detailed maps. These micro maps were so detailed that once, I remember I was handling one of the post-flood situations in Bihar [northern India] because one of the dams in Nepal had broken. The dam had actually collapsed. It collapsed. All the water came suddenly, affecting hundreds of villages in Bihar. In just a few hours, everything was underwater and the government of India created a disaster team. The military was given the mission to rescue people from those alienated islands. The military didn't know what direction to go—and, because they were so detailed, ended up using those polio micro plans.

So this is one programme where India exhibited strength, and its polio eradication programme has been called one of the best public health programmes in the entire world. One should learn from the polio reduction programme conducted in India. It's an example of magnitude, of positive magnitude.

On the other hand, the programme started in 2004 with one tablet, Albendazole. Another tablet was added in 2007, so two tablets need to be taken. If more than 85 percent of the eligible population in a given area consumed the drug once a year for five years, that population would be free from this disease forever. It’s such a common disease in Africa and in Southeast Asia, particularly in India. India is the second most affected country in the world, representing 40 percent of the world’s burden.

And this anti-lymphatic filariasis programme received a lot of commitment by the government, and a lot of donors. The BMC [British Medical Council] supports it, WHO supports it, even pharmaceutical companies. However, even though households are receiving that healthcare, but people are not consuming it, and because they're not consuming it, they still have microfilaria in their blood. They are still having lymphedema. The mosquitoes are still transmitting this disease from one person to another person. This failure is because of the community’s lack of participation, because this entire programme is centred around community.

In any public health programme where community is a central pillar, if you do not involve people through education, communication, counselling, and advisories, you won’t be able to make a dent. In polio we made the dent because we ensured that level of participation. In this lymphatic filariasis elimination programme, India has passed the elimination target three times. We are very close to the global elimination target of 2020, but I don't think we’ll be able to achieve that target. I'm sure India will miss 2020.

You can find the next part of Logically's interview with Dr Kumar, 'Understanding misinformation in India's public health field', right here.

NB: This article's header image is by rawpixel from Unsplash.