The Community Engagement and Policy Stewardship program at TIGS aims to integrate scientific advancements with a holistic approach to community engagement and policy stewardship. This approach aligns with the GoI Science, Technology and Innovation Policy 2013 principles, which include open science, transparency, extended engagement through public and expert consultations, promoting scientific temper, closing the gender gap, and translating science to societal needs.
TIGS is committed to achieving health equity and nutrition security by addressing community concerns through clear science communication and societal interface practices. Proactive community engagement involves amplifying concerns through consistent and clear science communication. Exploratory/action research projects lead to policy advocacy, funding opportunities, and system strengthening, ultimately positively impacting lives.
We have built socially conscious and ethically bound research programs to develop humanitarian technologies that will benefit and serve Indian society. These will help build trust with communities, network with humanitarian groups, develop global coalitions, and enable efficient technology transfer to stakeholders across all the core scientific research programs at TIGS.
Team
Saveetha Meganathan
Through various initiatives as part of our Community Engagement Program, we garner stakeholder interface, knowledge curation about the chosen topic, and aim at science communication that is valuable to society.
Activities
Genetic disorders are far from rare in India, owing to the high population density in the country, which translates to a very high disease burden. National Policy for Rare Diseases, 2021, states that ‘there is an immediate need to create awareness amongst the general public, patients & their families and doctors, training of doctors for early and accurate diagnosis, standardisation of diagnostic modalities and development of newer diagnostic and therapeutic tools.’
At TIGS, we are committed to accelerating diagnostics and therapeutics. With the Demystifying Rare Genetic Diseases project, we are developing innovative Information, Education and Communication (IEC) materials to engage relevant stakeholders to:
- Increase awareness and understanding of RGDs among clinicians and the general public
- Accelerate diagnostics for patients through the awareness campaign
- Empower individuals affected by RGDs through access to factual and reliable information
- Promote collaborations and knowledge exchange among experts, clinicians, and science communicators
Demystifying Rare Genetic Diseases Podcast Series
As a part of this project, a new podcast series has been initiated that aims to increase awareness about Rare Genetic Diseases and curate factual knowledge through conversations with experts.
NPRD, 2021 Resources
National Policy for Rare Diseases (NPRD), 2021, is the latest policy addressing the challenges of rare diseases in India. Through our Demystifying Rare Genetic Diseases project, we are shining a spotlight on the key points, strategies and recommendations mentioned in NPRD, 2021. Click here to know more on Prevention and Control Strategies mentioned in NPRD, 2021.
Thalassemia and sickle cell disease are examples of hemoglobinopathies, which are a class of genetic illnesses that impair the synthesis or structure of the haemoglobin molecule. Thalassemia, which is further classified as Alpha and Beta thalassemia, is caused by gene changes that affect the alpha or beta globin proteins. Globally, Beta-thalassemia affects 1.5% of the population, including carriers. Approximately 100,000 people in India suffer from beta thalassemia, which is caused primarily by common mutations. Alpha-thalassemia changes the beta-thalassemia phenotype, yet significant alpha deletions are uncommon in India. According to the 2011 Census, 3-4% of India’s 1.21 billion people have thalassemia, totalling 35-45 million, with 8% coming from tribal populations.
Genetic disorders, particularly beta-thalassemia major, require lifetime treatment. This requires constant community and family assistance. Managing clinical symptoms, medical expenditures, and out-of-pocket payments for transfusions is difficult. This study investigates thalassemia major patients’ quality of life, treatment management, and screening programmes. Understanding these characteristics helps to build patient advocacy groups and implement supporting policies. Clinical symptoms, treatment expenditures, and societal support all have an impact on a patient’s quality of life. Finally, the study emphasises the impact of hemoglobinopathies, specifically beta thalassemia, in an Indian environment. It emphasises the obstacles that patients confront, the necessity for community assistance, and the relevance of healthcare personnel awareness. The study’s findings help to inform continuing efforts in disease management, prevention, and policy implementation to improve the lives of thalassemia patients.
Investigator: Saveetha Meganathan
Collaborator: Indian Institute of Public Health, Gandhinagar
‘One Health’ is an integrated, unifying approach to balance and optimize the health of People, Animals and the environment. The one-health approach enhances global health security by promoting collaboration at the human-animal-environment interface. There was a need to create a single health index that simplifies complex health data, making it accessible to policymakers, healthcare providers, and the public.
To develop the One Health Index, a statistical framework was developed using which a One Health Index was calculated for India. To determine the lack of data and data gaps in India, indicators that contributed to One Health were assessed.
This framework brings to light the areas where improvement is necessary to bring a change in the OHI and thus according to the weights and the scores for each indicator, we can get indicator-based ranks and administer attention accordingly. The establishment of an index holds significant promise in various aspects of public health. This tool can play a crucial role in monitoring health trends, assessing the effectiveness of interventions, guiding policy-making processes, facilitating resource allocation, and pinpointing disparities that require targeted interventions.
Investigator: Saveetha Meganathan
Addressing the inappropriate use of pesticides for insect pest control necessitates a policy perspective that underscores the crucial need for a comprehensive assessment framework. Policies must advocate for systematic studies, meticulously gauging the extent of pesticide misuse, and considering factors such as application frequency, dosage, and adherence to safety standards. This in-depth analysis lays the groundwork for targeted initiatives that not only promote responsible pesticide usage but also safeguard both agricultural productivity and environmental health.
Recognizing the profound impact of climate change on insect pest dynamics is imperative. Policies should mandate thorough investigations to comprehend these dynamics, pinpointing vulnerable regions and crops. Armed with this knowledge, adaptive solutions can be proposed to mitigate the risk of excessive chemical pesticide use. This study aims to provide a comprehensive overview of insect pests and their implications for agriculture in India.
In the context of crafting policy recommendations, Integrated Pest Management (IPM) emerges as a strategic imperative. Policies should actively endorse the adoption of IPM strategies, prioritizing biological control, resistant crop varieties, and a diminished reliance on chemical interventions. This holistic policy approach harmonizes with sustainable agricultural practices, ensuring the resilience of India’s diverse farming ecosystems.
Investigator: Saveetha Meganathan
The project was designed to understand the effectiveness of science podcasts to pass the information on Antimicrobial Resistance to the public and was taken up as a dissertation study by a student at the University of Sheffield, Ananthapathmanabhan. A short survey was done with the students of St. Joseph’s University’s social work department. The study showed that even though people perceive their awareness of AMR to be sufficient, in reality, there are major gaps in understanding of AMR.
The role of podcasts in communicating information on AMR requires further research with a long-term empirical evaluation of the potential benefits of podcasts in causing behavioural change through the Information Education Communication (IEC) model. Future Science communication studies could explore standardised and tested models to communicate information to various communities
Investigator: Saveetha Meganathan
Collaborator: The University of Sheffield