Connections between India and U.S.

The stigmatization of HPV vaccination, a big issue in India, is also present in American society. HPV vaccines are most effective when administered to girls at ages 9-13—however, implementing them in schools is controversial because some parents are uncomfortable and reluctant because it is preventing a sexual disease. People in both societies also do not understand the importance of the vaccination because the effect is not immediate—it is preventing a disease that the girls commonly acquire in middle or old age.

Another similarity between Indian and American patients is that often when patients are presented with symptoms, they show up to the doctor for painkillers. They do not want to take off from work, or recognize the urgency of treating the cause of their symptoms.

Further, the poor carry more of the disease burden in India because they don’t have easy access to preventative services. The same is true for the US.

There is a shortage of doctors in rural areas in India. The same is true for the US.

Some of the same patterns of patient perception and healthcare access are clearly present in both societies. However, I’ve personally observed the US having in general much greater facilities and equipment to combat the problem. Plus, India has a much greater population in poverty and different cultural stigmas and therefore must implement different types of screening and vaccination programs than the US.

The societal role of women in United States and India also affects their healthcare access. In India, many women, especially if they are poor, are housewives and solely depend on their husbands. Many of those that interviewed stated that they do not want to “waste” time on screening and would rather use it to support the family. Our research also found that husbands play a major role in women’s health decisions. However, to me it seems that a higher proportion of women in US work and can support themselves. Based on my experience in US, the American attitude towards sex and sexually-transmitted diseases is much less conservative and more informed. I feel that this allows US women to be more motivated to seek care.

Begging in India

Probably, I felt most guilty and ashamed during my internship when encountering beggars who asked me for money. Despite coming to India every few years and experiencing this every time, I can never get used to it. I would always be asked when I’m in a group—with my co-workers or with my family (when I visited Delhi on weekends). Either way, the group around me would take me away and refuse to make eye-contact with the beggars. In one instance, a group of kids were so desperate that they snatched my food right out of my hands and passed it around to share with each other.

Both my co-workers and my family believe that giving money to the poor, especially poor children, is useless because those children actually work for and pass the money on to someone else. Begging is sometimes done by organized gangs, and beggars can often disfigure or alter their appearance to get more money. Or, they use the money to buy drugs. In addition, if you give money to one person, often many more follow you around and keep asking for more. Therefore, most of the people I’ve met to India normally ignore the beggars.

When I googled this issue online, all the sites recommend to not give money to the poor for these same reasons. One also mentions that the best way to uproot begging is if all people stop passing out money and “let the government continue with its poverty alienation” schemes” to help the poor.

I still am confused about what is the right thing to do. Although I realize that some of these perceptions are valid, it would clearly take at least several years for the government to develop effective policies to help the poor—do we just ignore those in need in the meantime? And even though giving money isn’t as sustainable as providing employment, healthcare access, etc, it will take many years of development and many funds to create programs such as these to support millions of India’s poor.

Ethical photography

July 31

When photographing in developing countries, the photos must be true to the reality of the country to prevent creating misconceptions and prejudice in the viewers. Any photography should not perpetuate the stereotypes about the society and should be respectful to the local culture.

The picture below shows jalebi, a popular sweet made by deep-frying flour and dipping it into sugar syrup. This picture displays a food item that is a key part of Indian dessert cuisine. It is commonly served in restaurants and food stalls.

Many people, my uncle included, get their groceries from outdoor food markets like this one.

The auto rickshaw is a common mode of transportation for people traveling short distances. Some are highly decorated and display many advertisements.

Many popular American chain restaurants, like McDonald’s and Subway, are present in big cities like Bangalore and New Delhi. They offer a different menu for the local palate, with more vegetarian and spicy options (and no beef).

How to make a greater impact

To make an even greater impact, students or short-term workers must first recognize that the work they do in a few months will not make an impressive difference. However, what I can do is keep asking questions to co-workers about their experiences with the issue so that I come away with a unique perspective that will allow me to continue to work towards solving the problem. Making connections with people would give me new ideas to continue to explore women’s health issue once I get back to Houston and beyond college.

What role do I play to make the greatest impact?

I believe Dr. Suneeta Krishnan and her team measure their success by observing whether their research has changed the viewpoints of key stakeholders and has motivated them to change their practices for the better. In this project, after we have finalized the report, the team plans to set up a meeting to present the results to key stakeholders (doctors, government officials) and to persuade them to correct certain practices and implement certain policies to improve cervical cancer prevention.

At first, I felt accomplished by just finishing my deliverables in a timely fashion. Because I had never done qualitative research and qualitative “coding” data analysis before, I felt a bit overwhelmed and did not know what was expected of my assignments.

Now, in addition to deliverables, I want to more deeply understand how research collaborations are formed and how studies are initiated. Therefore, I feel more successful simply from conversations with co-workers about how such connections are made.

Of course, if I had taken formal classes in qualitative research, I would have been better prepared for the internship. However, from this research I’ve learned how impactful words can be. Doctors’ and teachers’ words can stigmatize the disease and prevent women from seeking care. Therefore, I feel that my work with editing, re-wording, and analyzing the final report is important for the readers to understand the main take-away of the report. In this sense, I feel that I am making a difference. Systemic problems in the healthcare system and health communication can only be solved by talking to the leaders and healthcare professionals responsible for them.

Who is responsible for improving cervical cancer prevention?

After editing the results of the ACS final report, I’ve learned that doctors, educators, and government officials are all responsible for the observed delays in cervical cancer prevention. And further, communication is key to the solution.

Some doctors present the patients with false misconceptions that further stigmatize the disease. For example, some falsely believe that lack of menstrual/sexual hygiene can cause the disease and mention this to the patient. This creates another barrier for patients because they believe the disease is “dirty” because it is associated with sex and lack of hygiene. Another misconception is that they believe the HPV vaccine is unsafe and ineffective—however, numerous studies have disproven this belief. More medical conferences/discussions and proper education in medical school about this issue is necessary for doctors to properly treat and advocate for their patients.

Further, the doctors do not have enough time to counsel the patients—to inform and comfort them. Educating them about the importance of early detection is crucial to ensure patient follow-up. However, because of the immense population that doctors must diagnose and treat, the doctors cannot create more time in their schedule to educate the patient. The healthcare system, not the doctors, is at fault. Therefore, the government that designs policies that form the environment around the health system must create programs that improves counseling. For instance, introducing Village Health Nurses (VHNs) to recruit and support at-risk women in villages in Tamil Nadu was a great addition to the prevention program.

However, a practice I am ethically confused about is intentional dishonesty for the “good” of the patient. Some of the RTI research team members—and some of the doctors who were interviewed—believe that caregivers shouldn’t mention that abstinence can prevent the disease, because it may stigmatize the disease and make the women uncomfortable. However, abstinence is pretty much the only way to ensure that you don’t get cervical cancer. One of my team members said that realistically, people won’t stop if they hear this advice.

I understand their point of view. Our research has demonstrated that the deep stigma related to sex and “private parts” has created one of the greatest barriers against care-seeking and follow-up visits—therefore, portrayal of the disease by each point of contact (such as social workers or doctors) must be dealt with carefully. However, I also feel uncomfortable with the idea of hiding a key prevention method from the patient—it’s almost like letting people inhale tobacco smoke because you are scared they will run away from the treatment process when they get lung cancer.

It is evident that all weaknesses in cervical cancer prevention programs currently in India result from a lack of communication between different levels of the health system (community members/leaders, doctors, educators, government) at different segments of the treatment process (screening, vaccine, treatment/palliative care). Programs and policies must be implemented to ensure everyone is on the same page.

RTI is already taking the first step by creating “fact sheets” about the disease for providers, government officials, and community members.

Internship mid-point (already!)

July 5th, 2016

It’s already the mid-point of my internship. I’ve mainly been reading, writing, and formatting material for the ACS report (to be submitted soon!), but I already feel that I’ve become more aware about the publication writing process, cervical cancer and barriers to prevention, as well as how public health research is implemented. I recently started helping out with a second project that was launched recently (a few months ago), called the Digital Communication Toolkit. This project involves drafting a series of guidelines that will help governmental and health organizations to implement effective digital campaigns (Facebook, Twitter, Whatsapp, etc.) to raise awareness of cancer. I am writing the background/overview of the toolkit (about the prevalence/impact of cancer and the digital landscape in India) as well as the case studies (successful examples of digital health campaigns in India).

I was concerned that with my time split between two projects, I won’t be able to meaningfully learn about and contribute to one topic. However, Sandra explained to me that I am involved in the topic of cancer communication in both and will gain experience about this topic from both perspectives.

I had expected that I would be involved with field work–I was slightly disappointed that I could not go and witness the process of interviewing different stakeholders firsthand. However, the field work for ACS project is already completed and field work hasn’t started for the Digital Toolkit project because relevant stakeholders haven’t yet been identified. Therefore, I intend to ask workers around me in the office about the process and–aside from my assigned work and data analysis on my laptop–try to attend as many meetings so that I can still learn about the investigation process and how ideas/partnerships/projects form.

Why is Cervical Cancer Prevention Important?

June 11, 2016

Today, I met with Sandra (my mentor) to discuss the focus of her main research project, funded by American Cancer Society (ACS).

She explained to me that cervical cancer is a major public health challenge for India, with India harboring 1/4 of the world’s cervical cancer burden. Further, it is the leading cause of cancer mortality and the second-most common cancer in women (after breast). This is alarming because the disease is easily preventable if detected early enough! Because human papillovirus (HPV) infection progresses into cervical cancer, if this infection is detected early enough, cervical cancer can be prevented.

However, many state governments have not made cervical cancer prevention a priority–rather, they focus on hypertension and cardiovascular disease. This is because doctors/government officials/women may not realize the prevalence and lethality of the disease. In addition, because the disease is sexually-transmitted, women may feel embarrassed or shamed if they were screened. The weak health communication linkages and infrastructure are other barriers to efficient prevention. Those diagnosed may also be ostracized because of misconceptions that they are contagious or sinful. Further, the disease affects the poor disproportionately, because the poor have low health literacy and low access to healthcare resources.

Two states, Karnataka and Tamil Nadu, have introduced comprehensive cervical cancer prevention programs recently. The goal of this study is to assess the influences and different factors that form the environment around these programs, and identify gaps in communication and knowledge, weaknesses in healthcare infrastructure, and fear and stigma surrounding vaccination, screening and treatment of cervical cancer.

Understanding the importance/impact of the project

I’ve never participated in qualitative research before. In such research projects, different stakeholders (people whose opinions are relevant to the project’s objective) are interviewed with carefully constructed questions. Then, researchers “code,” or analyze and synthesize their responses in order to draw meaningful conclusions. Therefore, this process involves a lot of reading and writing to figure out: What is the most common opinion? What are the unpopular opinions? What are the possible social influences behind such opinions? What actions can be taken to solve the problems described? By whom?

I like how Dr. Suneeta Krishnan (the principal investigator who runs the project) approaches this research project because all data are analyzed with potential solutions in mind. The conclusions drafted from the study are not impractical, useless statements that describe the social environment behind the problem–rather, they consist of practical, action-oriented recommendations that different stakeholders can act on to battle cervical cancer. This way, the research report clearly explains what steps the readers (the government officials, doctors, health organizations) in their different roles can take.

We will submit the report the ACS and Suneeta’s team will also present the key findings in person to the different stakeholders so that effective prevention plans can be designed and improved upon. Unlike previous basic science lab research I’ve been involved with, Suneeta’s research takes a direct approach that actively delves into the problem and brainstorms potential solution. That’s why, even while writing portions of the report instead of personally witnessing the effects of cervical cancer, I still feel engaged with the issue and believe that my (and everyone else’s) contribution will produce some good.

Heading Over!

June 6, 2016

The day has finally arrived! Leaving tonight from Phoenix to Seattle to Dubai to Bangalore. I will be interning at RTI International in Bangalore, India, specifically helping with the cervical cancer prevention project.

So nervous but excited about this experience. I’ve been to India multiple times before to visit family, but have never stayed for this long alone in one location. In addition, because different parts of India have different practices, languages and culture, I’m anticipating that Bangalore will be quite different from the New Delhi I am more familiar with. I expect that people in Bangalore commonly speak Kannada and will probably eat more traditional South Indian food (such as dosa and idli) which I love! I’m also excited to explore the St. Johns Medical College campus (where I will be staying) and learn more about the medical school experience in India. This type of public health/policy research seems to be very different from the lab research I am used to–I’m curious about how researchers find people to interview and how they objectively analyze their answers to draft action-based recommendations. But because this type of work involves interaction and directly engages the issue, I might even like it better than lab work!

From this experience, I hope that I will gain a better understanding about how research and NGOs work to solving public health challenges in low-resource settings. I especially want to learn how cultural and social issues affect the research process and research reports we draft. And, how does the research we perform get incorporated into government policies, impact other public health organizations and affect medical practice? Ready to get started!