| Date 28-Feb-2019 to 28-Feb-2019 |
Location American Center, New Delhi |
Format Institutional |
Background
With rapid economic growth, agricultural-to-industrial and rural-to-urban transitions and inadequate and weak regulatory mechanisms, India faces many environmental challenges, which are affecting the health and quality of life of its population. Improving environmental health research and its translation to practice in India is essential to not only address the environmental health burden of disease, but also to meet India’s Sustainable Development Goals (SDGs) targets. Given the scope and urgency of India’s environmental health challenges, there is a need to generate local knowledge in diverse contexts of India to inform local practical actions and decision-making.
Experience shows traditional investigator-led academic research methods are not sufficient. Addressing environmental challenges requires engaging citizens in understanding the causes and co-creating solutions through Community Based Participatory Research (CBPR). Community-Based Participatory Research (CBPR) is a collaborative approach that involves all stakeholders in the process of undertaking research. It recognizes the unique strengths that each brings, aims to combine knowledge with action to achieve social change to improve outcomes that, in this case, will strive to eliminate environmental and health disparities
Mr. Conrad Turner, Cultural Affairs Officer, US Embassy, New Delhi
On 28 February 2019, citizens and researchers came together at the American Centre in New Delhi to discuss how CBPR can contribute to creating a safe, clean, and healthy environment, and how citizens can contribute to such efforts. The event titled, “Know Your Exposures, Know Their Impacts: Citizen Engagement in Environmental Health Research” was jointly hosted by the U.S. Department of Health and Human Services (HHS), the U.S. National Institute of Environmental Health Sciences (NIEHS), the University of Iowa College of Public Health, and Participatory Research in Asia (PRIA), India. The event was also an occasion for participatory researchers from India and USA to share their experiences in promoting CBPR in Environmental Health Research arising from a three day workshop, ‘Advancing Environmental Health Science Research and Translation in India through Community Based Participatory Research (CBPR)’. One of the takeaways of the workshop was to highlight the benefits of CBPR for environmental health, and the public event at the American Centre was beneficial in doing this.
“Know Your Exposures, Know Their Impacts” was centered around a panel discussion comprising CBPR practitioners and researchers. Mr. Conrad Turner, Cultural Affairs Officer, U.S. Embassy, New Delhi welcomed the panelists and participants. The discussion was moderated by Dr. Preetha Rajaraman, HHS Health Attaché to India and Regional Representative to South Asia. The panelists were:
Dr. Gwen Collman, Director - Division of Extramural Research and Training, National Institute of Environmental Health Sciences (NIEHS), U.S. National Institutes of Health (NIH), HHS, USA
Dr. Rajesh Tandon, Founder-President, Participatory Research in Asia (PRIA), India
Dr. Edith Parker, Dean, University of Iowa College of Public Health, USA
Mr. Jagdish Patel, Director, Peoples Training and Research Centre, India
Ms. Jyoti Pande Lavakare, President and Co-Founder, Care For Air, India
Participants
The event was attended by academicians, students, researchers, and practitioners from civil society organizations (CSOs), Universities, and think tanks across disciplines including medicine and law.
Highlights of the Discussion
The discussion was opened by Preetha Rajaraman as she invited the panelists to comment on how grave or big the problem of environmental health is, since its impact is felt across the globe.
Gwen Collman pointed out that air and water know no boundaries and environmental pollution caused in one location can have consequences in a different location. Efforts to address environmental health therefore need to be interdependent, collaborative, and convergent. The issue of environmental health is a problem of the people as much as it is a problem for science to investigate. It is imperative to take the science out from the labs, demystify environmental research, and put findings and solutions into the hands of the community.
Rajesh Tandon informed that impact of environmental health issues in India arising out of use of pesticides and air pollution have existed since the Bhopal gas tragedy of 1984. While the consequences of environmental disasters are increasing faster, there is still a very low level of awareness and even lower response to such concerns. Hence, there is a need to think of ways in which people can be engaged in research related to environmental health.
Edith Parker suggested that thy have been fortunate enough to receive funding from NIH to create a platform for demonstrating CBPR practices in the field of environmental research. In the absence of such mechanisms it is difficult even for enthusiastic researchers to contribute in doing research in participatory way with the communities and hoped that United States and India would be able to foster partnerships to initiate and support this kind of research.
Jagdish Patel elucidated that environmental health includes environment at work where we are exposed to several pollutants. It includes our exposures on the roads, on factory shop floors, within mines, and outside and inside our homes (which are often workplaces for informal sector workers). It is important to recognize that impact on health of the working population also impacts the economy of a nation. There are no laws to monitor workplace environment. At present, in India, when a new set of chemical products are launched, such as paints, varnishes etc., there is hardly any research on their potential hazards. There is a need to formalize the research in these areas and inform the users or consumers before they begin to use these products and chemicals. The issue of nano-particles present in ambient air is another problem that needs solutions.
Jyoti Pande Lavakare shared that air pollution has to date largely been seen as a problem of Delhi but now we know that it is a problem across the world. Air pollution does not just affect our respiratory organs but affects all the organs of the body through infection in the blood. For long, the problem of air pollution in India has been seen as a problem of the elite but actually it affects the poor and the middle class even more. Elites can access air purifiers but workers on the roads such as auto rickshaw drivers are impacted the most. Rising air pollution leads to high mortality; however, awareness of the consequences of air pollution among the general population is very low. Unless the experts of air pollution bring out their research in the public domain, use the results to inform and empower communities on their harmful effects, till then we will not see any change in our efforts to tackle air pollution.
L-R: Preetha Rajaraman; Gwen Collman; Rajesh Tandon; Edith Parker; Jagdish Patel; Jyoti Pande Lavakare
Using Community Based Research in Environmental Health Research
Preetha Rajaraman requested the panelists to comment on the significance of using CBPR in environmental health research.
Rajesh Tandon pointed out that CBPR has been practiced widely in many disciplines across India over the last 40 years, such as in land rights, water and sanitation, livelihoods, maternal health, but has not been applied much on the emerging issue of environmental health. The world of science in environmental health remains aloof of the real world problems related to air pollution, pesticide use, and environmental disasters in India. The discipline does not involve the community in framing the research question and investigating the reality together.
Gwen Collman shared that in the past 15 years, NIEHS in the United States has promoted CBPR in environmental health research, opening up various avenues for scientific researchers to engage with community mobilization and awareness. However, they acknowledge much more needs to be done. The U.S. experience teaches us that 4 to 5 pilots in different cities involving multiple stakeholders is necessary to build adequate evidence for the relevance and impact of CBPR. Knowledge production and action need to be linked to awareness in the community and their ownership of the generated knowledge.
Jagdish Patel further informed that in India, it is a challenge to get the poor and marginalized to talk about and get involved in environmental issues. In the occupational health domain, for example, practitioners have often experienced that workers are reluctant to speak of their occupational health problems as they are scared of losing jobs and livelihood. Occupational health diseases such as silicosis, asbestosis and byssinosis are still prevalent today, but even trade unions do not consider occupational health as a priority. Those working in the unorganized sector remain unaware of workplace occupational health hazards. Dust and pollution impact the health of street vendors, for example. It not only affects neighborhoods and the environment within homes, it can have other grave consequences. Parents die early, leaving orphaned children; women are deserted or left alone to bear the economic burden because their husbands are suffering from occupational health problems. There is no political will to work on the issue of occupational health, leaving the poor and marginalized vulnerable as they have no choice but to continue working in unhealthy work spaces.
Jyoti Pande reiterated that any change, however, would begin from awareness and from recognizing that our environment affects us every day, with impact over a long period of time. Hence, awareness programs should be linked to issues of public health and complemented with the hope of bringing socially responsible behavioral change on a mass scale. For this, there is need to build capacities of various institutions and encourage funding partnerships for the use of CBPR.
Methods of CBPR in Environmental Health Research and Affecting Policy Change
Preetha Rajaraman further requested the panelists to describe few models of CBPR and how it impacts the policy change.
Gwen Collman of NIEHS shared that there are a number of existing community air monitoring systems throughout California to provide data for and to support community specific actions. These existing community air monitoring systems utilize a variety of air monitoring approaches and technologies to address community-specific air quality concerns. Air monitoring within communities is often a collaborative process and can be led by community members, community groups, and/or state and local air quality agencies. Community air monitoring data uses can range from providing localized air quality information that may help an individual make decisions to reduce their personal exposure to informing local mitigation and regulatory authorities.
In one example Collman shared, a community concluded that the existing monitors were not adequate. With the help of an advocacy organization, community members went to air pollution experts. They started mapping the level of air pollution in their neighborhood and used the data to educate and inform each other. This led them to identify days when air pollution high in their neighborhood. Schools in that district were involved. A system of flags was devised. A red flag communicated to the community that young children would not go outdoors for recess on that day. Thus, technical experts and the community came together not only to raise awareness but also act to reduce their exposures to air pollution.
Edith Parker shared her experience where the scientific research done in partnership with community led to building self-confidence, trust and leadership amongst the people which was crucial in bringing about policy level changes. Though these successes were not many but this engagement was able to demonstrate how community can take leadership and decisions for their own future in a way that contributes to sustainability of the project.
Rajesh Tandon of PRIA shared that in India a number of brick kiln factories operate where workers live on the site, often with their families, in temporary hutments. These families move from one construction site to another. Some years ago, PRIA engaged with an environment group already working with brick kiln workers in the vicinity of Delhi. The workers reported suffering from breathing problems. When they went to health clinics and consulted the doctor, they were diagnosed with asthma, but the prescribed medicines brought no relief. PRIA partnered with National Institute of Occupational Health, under the Indian Council of Medical Research (ICMR), and got 100 workers tested for silicosis as a result of being exposed to dust for a prolonged time. Seventy of them were diagnosed with silicosis. A workshop was conducted with community leaders where the workers were informed of their actual disease as a result of their occupation. The data of the tests was shared with them, and the workers discussed what action they could take to mitigate the impact. A dialogue was held with local health inspectors and brick kiln supervisors. The workers presented their data to the health officials and employers. They were then sent to Employees' State Insurance (ESI) hospitals to get the relevant treatment and compensation for this disease. The workers and environmental groups also got together to campaign for provision of adequate residential facilities further way from the work site as well as crèches for their children. Many years later, the Supreme Court of India recognized health as a basic human right. Prior to this, a number of studies reports on silicosis remained on the shelves of NIOH without any action. However, when this data and knowledge was used to mobilize workers, an action for change was possible.
Jagdish Patel from PTRC shared that a number of occupational health diseases were diagnosed and informed to workers working in cotton mills through such initiatives. Byssinosis is a lung disease resulting from prolonged inhalation of cotton fibers. However, workers did not know about this. The doctors who examined these patients also did not know how to diagnosis byssinosis. The ESI Act had no provision for compensation for this disease either. PTRC organized meetings with the workers to inform and educate them about the disease. National Institute of Occupational Health (NIOH) and trade unions started locating workers and directing them to ESI hospitals for compensation. In Baroda, a 70-year-old glass factory kept diagnosing workers with tuberculosis (TB), even though they were suffering from silicosis as a result of being exposed to glass dust. The workers were made aware, which led to a campaign to advocate for adequate compensation for the disease. After many years, the Gujarat high court ruled that if a person is suffering from silicosis he/she must be considered to have 100 % disability.
Q&A session
The panel discussion raised some interesting questions from the audience. Students asked suggestions from the panelists on how youth can be empowered on the issue of environment within campuses. The current system of education in India teaches environmental science in the classroom with no learning about the issues affecting populations in the real world. Rajesh Tandon, as UNESCO Co-Chair in Community Based Research, shared his experiences in advocating for community-university engagement to make higher education more socially responsible. Jyoti Pande affirmed that youth can be empowered when they begin to ask relevant questions, have peer wide discussions and get involved with their immediate surroundings on an everyday basis.
An audience member highlighted how it was important to make special efforts to include the knowledge and voice of women in CBPR. The journey to undertake meaningful CBPR is long. Hence, combinations of techniques have to be used to engage the community, and especially women.
On how to initiate action by the community after awareness has been generated, Jyoti Pande Lavakare answered that media reports, newspaper articles, and public discussions bring confidence amongst the people or the community that are affected. While many laws and acts are available in India, enforcement is riddled with challenges and implementation more often than not is weak. This needs to change and involving the community in monitoring and implementing solutions is necessary.
Conrad Turner, Cultural Affairs Officer, U.S. Embassy, New Delhi said, engaged research requires research projects to weave in advocacy, social mobilization, and activism at the planning and strategy phase.
A student asking question to the panellists
In conclusion, each panelist shared a key takeaway for the audience.
Workplace environments have affects beyond the workspace and the impact of occupational health needs to be looked at from a wider perspective, said Jagdish Patel
CBPR calls for partnerships and to make research rigorous, partnerships are crucial. The workshop has shown many potential avenues for building partnership between the United States and India, said Edith Parker.
Information and awareness are the keys to initiate action for change. The more we know about our environment the better we would feel equipped to do something about it, said Gwen Collman.
Rajesh Tandon urged every member of the audience to become “active, engaged citizens”. We usually behave either as voters, consumers, or beneficiaries. For every question related to capacity and funding for doing engaged research in the area of environmental health in India there is a law, research body, and funding institution. It is time we began to ask questions and make our ministries, departments, and research institutions accountable for the research they conduct.
Finally, Jyoti Pande Lavakare emphasized that the challenge of environmental health needs collaboration with the community as well as other stakeholders. We all must do our bit in raising awareness and advocacy and engage our friends, family, peers, and neighbors to get involved in CBPR for environmental health research.