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Small Steps Matter When Big Ones Are Harder to Come By: An Actionable, Ground-level Perspective, Seeing JE/AES in India for Over a Decade

By A. K. Srivastava and Biplav Srivastava

Another year, another season of avoidable deaths due to Japanese Encephalitis (JE) and its related diseases in Eastern India [1a, 1b]. Diseases and deaths should never be treated lightly and especially when there is a predictable pattern of their occurrence, impact and remediation choices for over three decades. Many have been active on the ground for years to prevent it. But the biggest of all, government and especially its bureaucracy, has been callously ill-prepared, seeped in corruption and ignorance, and mostly irrelevant.  The media, continuously in reactionary mode like government, has started paying attention momentarily, but they do not always have the full picture and commitment to follow through. In this article, we offer some practical things everyone can do to make meaningful, albeit small impact, while major stakeholders do what they should have done all these years. The insights are derived from the ground-level work of a non-profit which has been engaged on the ground for a decade with limited resources [2a] and modest outcome [2c]. We draw on these material extensively.

As background, Japanese Encephalitis (JE) is a killer disease. Japanese encephalitis (JE) remains the most important cause of Acute Viral Encephalitis (AES).  We use JE and AES interchangeably for the purpose of this article. It has been widely found through-out the world, especially in the Indian sub-continent and South East Asia, Japan, China, Korea, Taiwan. It continues to spread to hitherto unaffected regions like Indonesia, Pakistan and Australia. Approximately 60% of the world population inhabits JE endemic areas.

In India, it is widely spread in most major states like Uttar Pradesh (U.P.), Bihar, Andhra Pradesh, Tamil Nadu, Kerala. It came to Purvanchal, i.e., the eastern rice belt of U.P. touching the Nepal and Bihar borders, in 1975. Looking closely at just this region, JE was noticed predominantly in the year 1978 (when 274 cases of JE were reported to BRD Medical College, Gorakhpur and 58 deaths occurred) and since then it has taken more than fifteen thousand lives and severely affected hundreds of thousands of people. In BRD Medical College alone, from 1978 to 2016, the number of Encephalitis patients and death toll is reported as 39,735 and 9,604, respectively. For 2017, the corresponding figures until Aug 20 are 924 and 127, respectively. But all the patients did not go to BRD Medical college – some were lost at the initial stage at village level, some at Tahsil (Sub-division) level and hardly 20% could reach the district hospital or Medical College level. From 1978 to 2017, in 40 years, the U.P. state has seen 21 Chief Ministers and 11 Governors, and almost all the political parties and their combinations have ruled the state, but so far, as far as JE/ AES victims are concerned, the crisis is still the same. In the affected area, even the basic infrastructure has not been built-up and the health services are not up to the marks. More and more cases of mortality and morbidity still reported years after years.

In the past decade, the Government of India has pumped a good sum of money. Specifically, it sanctioned about Rs.4000 crores (approx. USD 650 million at current rate) of which only 400 crores (10%) was actually spent. Still, the death toll never came down and 5954 deaths were reported in this period from the hospital alone, making the toll average about 600 deaths each year.

In this dismal public health scenario, a number of things need to be done by authorities which are well known and widely documented [2b]. They include:

  1. Take preventive steps, including spreading awareness
  2. Improve public sanitation
  3. Make medical facilities, personnel and medicines available
  4. Provide follow-up relief and rehabilitation
  5. Improve inter-agency coordination at all levels
  6. Collect data and take data-driven decisions
  7. Hold officials accountable

It is no secret that authorities have failed miserably. But individuals and institutions can also do small things in their personal capacity.

  1. Spread awareness on prevention methods:
    Prevention is always easier than cure. Some of the most effective methods in public health for JE are included in the prepared poster with help from relevant experts and UN materials. Individuals can read it as well as communicate about it to their social circles. Institutions can circulate the poster through their medium and also sponsor advertising it in newspapers. Further material needs to be prepared for radio ads and others can help.
  2. Help victims seeking medical help: One of the biggest challenge for patients seeking medical help is transportation to the hospital. Individuals with vehicles and accommodation to spare can help patients in need.
  3. Help authorities tackle public health epidemic by improving hygiene: Do it by demanding more fund for supply of safe drinking water to all and toilets in each house in areas prone to water logging.
  4. Hold public officials accountable by demanding data:
    Verifiable data about JE/AES prevalence is not widely available. As the incidences unfold in 2017, authorities should record them and share it publicly. People need to demand seeing this data. APPL has been collecting detailed case studies for hundreds of patients who have survived and created reports [2b], but such individual efforts are no substitute for institutionalized data collection.
  5. Help create a scientific culture for relief around collected data.
    Whatever data is available can be used to drive new insights and provide timely policies and interventions. Students and professionals should come out and use their skills to develop apps towards that effect [3].

 

  1. K. Srivastava is the Executive Trustee of APPL. Biplav is a computer scientist involved with data and decision-support issues. All views expressed are personal.

 

Acknowledgements: A lot of people from all walks of life have helped APPL over the years in its activities that have made these insights possible. We thank them.

References

  1. Recent JE/ AES in news
  2. Quick background on JE in Indian Express:  http://indianexpress.com/article/what-is/encephalitis-causes-prevention-and-prevalence-in-india-explained-gorakhpur-tragedy-4793031/
  3. NY Times on JE and Oxygen shortage: https://www.nytimes.com/2017/08/17/world/asia/the-night-the-oxygen-ran-out-in-an-indian-hospital.html

 

  1. APPL’s efforts on JE
  2. Site: http://appltrust.org/projects/je-projects.htm
  3. JE Reports:
    1. Ground Realities – A report on Status, Disability and Rehabilitation

of the victims of Japanese Encephalitis/ Acute Encephalitis Syndrome in Eastern Uttar Pradesh, 2011. At http://appltrust.org/files/GROUND-REALITIES-FINALISED-report-Dec2011.pdf

  1. A Report On Disability and Rehabilitation of the victims of Japanese Encephalitis in Eastern Uttar Pradesh, 2007. At http://appltrust.org/files/JE-final-report.pdf
  1. Media
    1. [19 September 2013] A panel discussion on 19th September 2013 at 13:30 Hrs. (IST) on national TV featured APPL-Trust on an area we have been active in for years – Japanese Encephalitis (JE). The panel discussion was on ‘Encephalitis : A killer-on-the-loose’ and had Dr. A. K. Srivastava, Executive Trustee, APPL, which was broadcasted live by NDTV 24*7 channel. The program duration is 15 minutes 38 seconds and the discussion starts after 4 mins. The link is :
      http://www.ndtv.com/video/player/news/encephalitis-a-killer-on-the-loose/291187
    2. [November 2009] The work of APPL in the fields of study of Disability of victims of Japanese Encephalitis in the eastern part of U.P. has been recognized by National Hindi Weekly in India “India Today”.
    3. [September 2009] The work of APPL in the fields of study of Disability of victims of Japanese Encephalitis in the eastern part of U.P. has been recognized by National Hindi Daily in India “Amar Ujala’.
    4. [October 2008] The work of APPL in the fields of study of Disability of victims of Japanese Encephalitis in the eastern part of U.P. has been recognized by the National  Weekly : ‘India Today’.
    5. [August 2008] The work of APPL in the fields of study of Disability of victims of Japanese Encephalitis in the eastern part of U.P. has been recognized by the National Hindi Weekly in India “India Today”.
    6. [September 2007] The work of APPL in the fields of study of Disability of victims of Japanese Encephalitis in the eastern part of U.P. has been recognized by National Hindi Weekly in India “Pratham Pravakta.
    7. [March 2007] Study of JE featured in India Today (a prominent weekly Indian magazine – Hindi issue), March 2007. Page 1, Page 2.

 

  1. A Data Contest to Promote Public Health Using Indian Open Data – DataView 2016, At: https://www.linkedin.com/pulse/data-contest-promote-public-health-using-indian-open-2016-srivastava

 

Open Socio-Research Problems

Many have approached us for  ideas. With that motivation, here are some ideas for socio-research projects suggested with the aim to promote high quality research that is globally useful.

Gandhi ji’s talisman
“I will give you a talisman. Whenever you are in doubt, or when the self becomes too much with you, apply the following test. Recall the face of the poorest and the weakest man [woman] whom you may have seen, and ask yourself, if the step you contemplate is going to be of any use to him [her]. Will he [she] gain anything by it? Will it restore him [her] to a control over his [her] own life and destiny? In other words, will it lead to swaraj [freedom] for the hungry and spiritually starving millions? Then you will find your doubts and your self melt away.


Problem #1
Statement:
Suggest public health plan for a seasonal disease in a future period based on open data
Description:
There are many seasonal diseases – dengue, malaria, Japanese echephalitis, … There are many known techniques to tackle them – put health advertisement, de-fogging, vaccines, mosquito nets, … which come at different costs and relative effectiveness. Open data from government, like data.gov.in’s site and APIs, provide data for many years on them. Still, in 2014, starting with May and monsoon, hundreds of people will die. What public health plans can we put in as advisories for all districts of India on what to do and when, and how many disease cases/ diseases will it reduce? The default public health plan is to do the same as last years, i.e., nothing, and have linear increase in reported cases and deaths.
The technical challenges will be (1) data related: missing data, aggregate data, .. (2) selecting right analytical methods that account for data issues, and (3) generating cost-efficient public health plans.

Problem #2
Statement:
Create a travel recommendation system to suggest travel plans for individuals that reduces footprint on the road
Description:
Travel recommenders suggest ways for an individual to travel in a city including one or more information from – path, mode, vehicle and time. However, they should also suggest it in a manner that the travel have least impact on the city’s resources. Example, take less road space, not cause delays, need little route management. This is because both private and public resources need to be optimised for a viable long-term solution.
See further details here: Biplav Srivastava, Raj Gupta, Nirmit Desai (2014). “Challenge: Loosely Synchronized Multi-Modal Plans for Traffic Improvement and Commuter Convenience” in IBM Research Report No. RI14001, At: http://domino.research.ibm.com/library/cyberdig.nsf/index.html

Problem #3
Statement:
Create visualisations showing return of investment in public service domains – e.g., health, energy, crime, water, employment generation, and their relative efficiency
Description:
Conventional wisdom says that the more money you put in a process, the better the result should be. For different public service domains, result translates to different metrics but the principles stay the same. So, show how much was the money (resource) spent in an area and whether the corresponding result was obtained. Further, which area gave the best result. Example of metrics for different domains are: health – number of deaths per 1000, energy – annual hours of power outage per capita, crime – number of deaths per 1000 population, water – number of people with potable water per capita, employment – number of unemployed per 1000.

Let’s talk

This is the place to provide your comments on APPL’s work: past, present and what could be done in future. Also, you can find bulletins and ideas emanating from the group on different aspects within APPL’s charter.

Do see the blog pages (on the right) to discuss on specific themes or here for anything that is not covered.

There is a blog that Biplav, one of the people associated with APPL, maintains on mentoring for technical career. It can be accessed here.