Johns Hopkins Gender Equity Unit Projects with India

AIIMS P.I: Manoj Gupta, MBBS, MD

Co-investigators: Dr Rashmi Kaushal, B.D.S, MPH, Dr Chandra Prabha, PhD, Dr Nitin Kumar Joshi, B.D.S, MPH, PhD

GHAI: Dr. Om Bera, B.D.S, MPH 

GEU PI: Michelle Kaufman, PhD

Co-investigators: Claire Conry-Murray, PhD, Kate Wright, MPH, Clara Flores, MSS, Gayatri Malhotra, MPH

Despite the critical importance of mortality data, particularly concerning age, sex, cause of death, and geographic location, there remains a significant gap in utilizing such data for policy formulation and health interventions in India. This gap is largely attributed to substantial underreporting of deaths in various states, limiting the effectiveness of health planning initiatives. These discrepancies hinder governments from recognizing critical health issues and developing gender-sensitive policies.

Given the implications of incomplete death registration, our goal is to use this study to comprehend the challenges and barriers underlying the gender gaps in death registration, and to identify possible facilitators and mechanisms that encourage female death registration to recommend data-backed policy strategies for improvement.

We will conduct IDIs, KIIs, and FGDs across seven districts in Rajasthan (Jodhpur, Jaipur, Ajmer, Barmer, Nagaur, Bikaner and Dausa) from Rajasthan’s seven geographical zones. In each zone, districts are segregated on the basis of death registration coverage rates. We identified two groups of districts: one with the highest and one with the lowest death registration coverage rates in each zone. Out of these identified districts, we chose seven districts (three with highest registration coverage rates (Jodhpur, Jaipur, Ajmer) and four with lowest registration coverage rates (Barmer, Nagaur, Bikaner, and Dausa) and both urban and rural areas) through purposive sampling.

AIIMS P.I.: Nikkah Bhardwaj, MD

Co-investigators: Dr Rashmi Kaushal, B.D.S, MPH, Dr Chandra Prabha, PhD, Dr Nitin Kumar Joshi, B.D.S, MPH, PhD 

GHAI: Dr. Om Bera, B.D.S, MPH

 GEU PI: Michelle Kaufman, PhD

Co-investigators: Claire Conry-Murray, PhD, Kate Wright, MPH, Clara Flores, MSS, Gayatri Malhotra, MPH

Prior studies in India indicate a substantial undercounting of stillbirths, with many occurrences going unreported and discrepancies in reported stillbirth rates from various sources. Socioeconomic development seems to influence stillbirth registration, with approximately 60% of registered stillbirths occurring in urban areas of India. Although several factors have been proposed as causes of low stillbirth registration, significant gaps remain in understanding the barriers and challenges faced by individuals in registering stillbirths, necessitating further comprehensive studies.

Our goal is to address the under-registration of stillbirths by identifying barriers, potential facilitators, and government incentives for stillbirth registration, aiming to contribute to the improvement of health and civil registration data, and ultimately supporting public health planning and interventions.

This study will involve one-on-one in-depth interviews (IDIs) with community members; key informant interviews (KIIs) with 1) individuals from relevant community organizations/local non-governmental organizations (NGOs) and 2) government officials from the sub-district, district, and state levels, and 3) religious leaders; and focus group discussions (FGDs) with Auxiliary Nurse Midwives (ANMs) and Accredited Social Health Activists (ASHAs). We will identify IDI participants by accessing records from hospitals, panchayat offices (in rural areas), municipal corporations (in urban wards), community organizations and local NGOs, and information from community health workers.

Co-investigators: Chandra Prahba, PhD, Dr Nitin Kumar Joshi, B.D.S, MPH, PhD

GHAI: Dr. Om Bera, B.D.S, MPH

GEU PI: Michelle Kaufman, PhD

Co-investigators: Claire Conry-Murray, PhD, Kate Wright, MPH, Alycia Hancock MPH, Clara Flores, MSS

In recent years India has championed progressive legislation protecting the rights of transgender people, including the 2014 National Legal Services Authority (NALSA) v. Union of India judgment (affirming self‑perceived gender identity) and the Transgender Persons (Protection of Rights) Act of 2019. In Rajasthan, the first transgender Birth Certificate was issued in 2023, marking a transformative milestone in legal gender recognition within the civil registration and vital statistics (CRVS) system. In an effort to build on this momentum, the Global Health Advocacy Incubator (GHAI) has facilitated the implementation of “Project 1000,” an effort to facilitate the registration of transgender people, specifically focusing on amending birth certificates for at least 1,000 transgender individuals in Rajasthan. With this work now expanding to the neighboring states of Odisha and Gujarat, it is imperative to assess these efforts and understand the ongoing barriers and facilitators to changing one’s gender on birth certificates. In collaboration with GHAI and AIIMS Jodhpur, the Gender Equity Unit is conducting a study to 1) understand the status of implementation of legislation providing for legal gender recognition facilitated by civil registration systems in Rajasthan and (2) examine barriers and facilitators to changing a person’s gender on their birth certificate and/or obtaining a transgender registration card.