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
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
- Demystifying Rare Genetic Diseases - Empowering Patient Access
- Policy Stewardship for Hemoglobinopathies in India
- One Health Index for India
- Policy stewardship to address the inappropriate use of pesticides for insect pest control
- Policy Perspectives on Antimicrobial Resistance (AMR) - Knowledge, Attitude and Practice
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
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
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
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
Antimicrobial resistance (AMR) is a critical global public health challenge, exacerbated by the overuse and misuse of antibiotics in humans, animals, and agriculture. In India, the burden of AMR is particularly alarming due to widespread irrational antibiotic prescriptions. This project was undertaken to address the knowledge gaps and behavioral patterns contributing to AMR in primary health centers (PHCs), focusing on medical officers (MOs) who are at the forefront of healthcare delivery in Bengaluru.
The main objectives of the study are to assess the knowledge and attitudes of MOs regarding AMR and Antimicrobial Stewardship Programs (ASP), their antibiotic prescribing behavior, and their opinions on potential interventions to improve antibiotic use. Through a cross-sectional survey of 73 MOs, key insights were gathered on their understanding of AMR, prescribing habits, and attitudes toward stewardship programs.
Significant progress has been made with a response rate of 75%, revealing that while most MOs have good knowledge of AMR (56.4%) and ASP (87.3%), there are notable gaps in prescribing practices, particularly those with fewer years of practice. These findings highlight the necessity for policy-driven strategies such as Continuing Medical Education (CME) and regular training on AMR guidelines. Implementing such measures could support more rational prescribing practices, helping curb AMR and strengthen stewardship efforts at the primary care level in India.
Investigator: Saveetha
Collaborator:
Bruhat Bengaluru Mahanagara Palike (BBMP), Bengaluru