FINAL REPORT Award Period: July 1, 2018 – June 30, 2019

BU Global Programs & BU Foundation-India Seed Fund

1. PROJECT TITLE: Capacity-building in mental health research on serious mental illness in Tamil Nadu, India and Boston, USA

2. ABSTRACT: Through the support of the BU Global Programs – BU Foundation-India (BUFI), The Banyan/TISS- BALM and the BUSM Department of Psychiatry engaged in institutional exchanges and a comparative research project that aimed to build capacity for mental health research. Findings from the comparative research project will inform the design and development of a model of care that can be scaled up to a health systems level to ensure more effective and accessible mental health care is provided to vulnerable patient populations in India and in the U.S.

3. COLLABORATORS (individuals and institutions – please include all local stakeholders who have collaborated on this project during the award period):  Dr. Vandana Gopikumar, Professor, School of Social Work, Tata Institute of Social Sciences (TISS) and Co-Founder of The Banyan and the Banyan Academy of Leadership in Mental Health (BALM)  Ms. Smriti Vallath, Faculty, TISS-BALM; Clinical Psychologist at The Banyan  Ms. Mrinalini Ravi, Faculty TISS-BALM  Ms. Tanya Joseph, Head of Monitoring and Evaluation Services, TISS-BALM  Ms. Archana Padmakar, Faculty, TISS-BALM  Ms. Kamala Easwaran, The Banyan  Dr. David C. Henderson, Professor and Chair, Department of Psychiatry, Boston University School of Medicine (BUSM) and Boston Medical Center (BMC)  Dr. Christina P.C. Borba, Associate Professor and Director of Research, Department of Psychiatry, BUSM and BMC  Senait Ghebrehiwet, Global Program Manager, Department of Psychiatry, BMC

1  Tithi Baul, Biostatistician, BMC  Clinical Data Warehouse (CDW), BUSM

4. PROJECT RATIONALE: Within the health sphere and global policy, mental illnesses remain a public health challenge. In both the USA and India, care protocols remain only satisfactory in catering to the mental health needs and overall well-being of individuals living with serious mental illnesses (SMIs).

TISS-BALM was founded with the vision of enhancing human resources working for marginalized communities within the Indian context. Consequently, TISS-BALM focuses on transdisciplinary research in order to impact service models and public health approaches to care. As the primary teaching affiliate for BUSM, BMC shares a similar vision of providing accessible health services to all in need of care regardless of status or ability to pay. Through collaborations between BUSM Department of Psychiatry in Boston and The Banyan/TISS-BALM in Chennai, this project aimed to compare health care models between the two study settings in order to identify possible gaps in care and determine best practices that will help advance mental health care delivery systems in the two countries.

5. PROJECT GOALS: The purpose of this seed fund was to enable both partners to cultivate long-term institutional collaborations in order to conduct evidence-based mental health research that informs the development of sustainable health systems level changes. Through this collaboration, we continue to enhance the research capacities of staff in transdisciplinary research as well as clinical practice in low resource settings within the Indian and American contexts. Training to individuals at various levels (i.e., medical residents, psychiatrists, psychologists, social workers, etc.) is provided with the vision of enhancing research expertise within a practice framework that will contribute to the long- term improvement of mental health outcomes in India and the U.S.

During the project period, TISS-BALM and the BUSM Department of Psychiatry aimed to increase the research capacity of the partnering institutions by: 1) promoting institutional exchanges; and 2) conducting a comparative research project. Findings from the comparative research project will inform the design and development of a model of care that can be scaled up to a health systems level to ensure more effective and accessible mental health care is provided to vulnerable patient populations in India and in the U.S.

6. DESCRIPTION OF WORK COMPLETED DURING SEED FUND PERIOD: Institutional Exchange In January 2019, The Banyan Academy of Leadership in Mental Health (BALM), Kanchipuram and the Tata Institute of Social Sciences (TISS), Mumbai, India hosted the 2nd International Conference on Mental Health and Inclusive Development from 6-8 January 2019. The team – Ms. Mrinalini Ravi, Faculty TISS-BALM, Lead, Centre for Homelessness and Social Vulnerabilities and Ms. Smriti Vallath, Faculty TISS- BALM, Program Manager and Clinical Psychologist, led by Prof. Vandana Gopikumar, Faculty TISS and Co-Founder of The Banyan and BALM, and Mrs. Madhuri Menon, Dean TISS-BALM – was involved in the planning and execution of the conference since August 2018. The conference focused on discussions related to inclusive living options for persons living with mental illness experiencing long-term care needs. The conference brought together mental health clinicians, policy makers, activists, and researchers from various parts of India and the world.

Speakers from various international and national schools and organizations, including faculty from TISS, were critical in discussing challenges to strengthen service delivery systems and to encourage the development of models of care that drive social inclusion for individuals with SMI. Through the support of the BU Global Programs – BU Foundation-India (BUFI) award, four members

Pictured (L to R): Mr. Indu Prakash Singh (City Makers International), Prof. Sanjeev Jain (NIMHANS, Bangalore), Dr. KV Kishore Kumar (Faculty, TISS-BALM, Director, The Banyan), Dr. David Henderson (BUSM/BMC), Dr. Chitra Venkatesh (MEHAC Foundation), Ms. Tasqeen Macchiwala (Azim Premji Philanthropic Initiatives), Prof. Anirudh Kala (Mind Plus)

3 of the BUSM Dept. of Psychiatry research team attended the conference. Dr. David Henderson, Chair, BUSM Dept. of Psychiatry and BMC, discussed the need for long-term care within mental health systems, especially in low- and middle-income countries (LMICs). In addition, the BUSM psychiatry research team visited The Banyan’s Emergency Care and Recovery Center (ECRC), which facilitated better understanding of the mental health scenario and research needs.

In March 2019, a representative of The Banyan’s research team, Ms. Vallath, traveled to Boston to visit the BUSM Dept. of Psychiatry. During her month-long stay, Ms. Vallath participated in a wide range of research and practice-related activities, including weekly psychiatry grand rounds, didactics with our global mental health postdoctoral fellows, and meetings with clinical and research faculty in the department. In addition to attending lectures on global mental health, Ms. Vallath had the opportunity to shadow Dr. Henderson in the outpatient psychiatry clinic and received training and mentorship from both him and Dr. Christina Borba in qualitative and quantitative research methods. These skills Pictured (L to R): Dr. Christina Borba, contributed to significant advancements in her Ms. Smriti Vallath, Dr. David Henderson doctoral work, including research articles to be submitted for publication in the coming months. Comparative Research Project During the project period, the collaborating institutions (TISS, The Banyan/BALM, and the BUSM Dept. of Psychiatry) initiated a comparative research study to examine the health and mental health experiences of homeless individuals with serious mental illness (SMI) served at The Banyan in Chennai, India and BMC in Boston, USA. The Banyan’s research team (including Ms. Tanya Joseph, Head, Monitoring and Evaluation services, TISS-BALM, Ms. Archana Padmakar, Faculty at TISS-BALM and Ms. Smriti Vallath; supervised by Prof. Gopikumar and Dr. Narasimhan, Faculty at BALM-TISS) and the BMC research team (including Ms. Tithi Baul, Biostatistician and Ms. Senait Ghebrehiwet, Global Program Manager, BUSM Dept. of Psychiatry; supervised by Drs. Henderson and Borba) prepared datasets which were representative of homeless individuals with SMI in India and the U.S. The teams worked collaboratively through site visits and regular meetings to complete the cleaning and management of qualitative and quantitative data pulled from patients’ medical records. Analyses were conducted to compare sociodemographic characteristics and health outcomes between study samples from both settings, as described below.

Methods Study settings The Banyan is a not-for-profit organization that works with marginalized communities, especially homeless persons experiencing severe mental illnesses. In the field for 25 years, The Banyan has extended reach to over 1 million persons across India. Approximately 95% of persons accessing The Banyan’s services are from rural backgrounds, speak various dialects and most often are diagnosed with psychotic spectrum conditions. Intellectual disability is a common co-occurrence, which often

4 plays a role in individual care plans developed for service-users. The Banyan and TISS-BALM have pioneered care protocols for this population by bringing the affected individual into care, offering basic needs (such as food, water, shelter, and clothing), providing mental and physical health care rooted in a biopsychosocial, user-centric framework, and connecting patients to rehabilitation services. This model of care has been replicated by local government agencies across the state of Tamil Nadu. This process is documented and data is managed in-house by the Department of Monitoring and Evaluation.

Boston Medical Center (BMC) is a private, not-for-profit academic medical center, and is the largest safety net hospital and busiest trauma and emergency services center in New England. At BMC, 72% of all clients are from racial and ethnic minority populations and 32% do not speak English as a primary language. Similar to The Banyan, approximately 75% of BMC patients come from historically marginalized communities, including low-income families, people with disabilities, people with mental illness and substance use issues, and immigrants. As such, BMC’s Department of Psychiatry serves the majority of Boston’s most complex patients, including adults who self-identify as having been diagnosed with SMI or having experienced emotional distress, trauma, or significant mental health challenges. Nearly 63% of adult patients seen by the BMC Dept. of Psychiatry have comorbid psychiatric and physical health diagnoses, compared to 46% across the U.S.

Study procedures This comparative research study utilized secondary data collection methods by accessing clinical data warehouses at The Banyan and at BMC during the month of January 2019. Data were obtained through a retrospective chart review of medical records of patients who visited The Banyan’s Emergency Care and Recovery Center (ECRC) from 2016-2018 and patients who visited BMC’s outpatient psychiatry clinic from May 2015 to December 2018 (BUMC IRB H-38389). All patients included in the study were ages 21 years or older, identified as homeless at the time of their visit, and were diagnosed with a SMI. Serious mental illness was defined as a diagnosis of schizophrenia, schizoaffective, delusional, and other non-mood psychotic disorders (using ICD codes F20 through to F29 for BMC medical records).

Results Sociodemographic characteristics Chennai, India From 2016 to 2018, 131 homeless patients with SMI were identified from The Banyan’s ECRC medical records; 3 patients were excluded since the one presented with dementia, and two did not have mental illnesses. Due to the nature of The Banyan’s services, all patients identified were female. The average age of the study sample was 41.1 ± 10.1 years, and the mean educational attainment was 5.6 ± 4.8 years. The median length of stay at The Banyan. From data reported by case managers, it appears that the median years of illness is 2, while the median years of compliance is 1 (see table 1a). All patients had experienced a history of homelessness at least once prior to their current episode. Additionally, the majority of patients were married (53.8%), from nuclear families (57.1%), unemployed (55.8%), and from rural areas of the country (56.8). The primary mental illness among The Banyan’s study sample was psychosis (73.2%).

Boston, USA From May 2015 to December 2018, 261 homeless patients with SMI were identified from BMC’s outpatient psychiatry clinic medical records, which included both sexes. The average age of males and females did not show large variations (46.7 ± 13.3 years and 49.6 ± 13.6 years, respectively). Most patients had completed either some high school education or graduated from high school. The large majority of both male and female patients were single (87.3% and 72.5%, respectively) and unemployed (66.7% and 76.3%, respectively). The study sample also included a higher proportion of Black/African American patients compared to other races. Most participants also identified English as their primary language. The primary mental illness among BMC’s study sample for both sexes was schizophrenia (48.6% of males and 36.2% of females). Data on compliance and duration of care was unavailable.

Discharge disposition, which defines where a patient is discharged to, is critical in limiting hospital readmissions and improving patient outcomes. Evaluation of current data revealed different discharge outcomes between the two study settings. Patients at The Banyan’s ECRC were most frequently reintegrated with their families post discharge (60.0%). Those who could not be reintegrated with their families or a local nonprofit organization remained at the ECRC (24.4%). In contrast, most female patients seen at BMC were sent home to care for themselves (68.4). A small proportion were also discharged to a skilled nursing facility (15.8%). Physical comorbidities are also known to be crucial to the mental illness profile since they interplay with the prognosis of the primary mental illness as well as impact an individual’s attitude towards treatment and functioning. The results indicated that the most frequent co-occurring physical comorbidity among The Banyan’s study sample was anemia (61.1%); in contrast, the top two co- occurring physical comorbidities among BMC’s female patients were cardiovascular disease (28.8%) and diabetes (22.5%).

7. PROJECT OUTCOMES TIED TO GOALS: Findings obtained from the comparative research study have indicated several key takeaways. Overall, the sociodemographic characteristics of the two study samples were similar with respect to patients’ employment status; however, critical differences existed. Female patients seen at BMC’s outpatient psychiatry clinic were approximately 8 years older, on average, than those served at The Banyan’s ECRC. The majority of The Banyan’s sample was also married while most female patients seen at BMC identified as single. In addition, most female patients in the U.S. setting were discharged home while patients in the Indian context were often reintegrated with their families. The Banyan/TISS-BALM and the BUSM Department of Psychiatry aim to further investigate the effects of an individual’s social context, including their support systems, in the long-term improvement of mental health outcomes.

Pictured (L to R): Senait Ghebrehiwet (BUSM/BMC), Tithi Baul (BUSM/BMC), Mrinalini Ravi (Faculty, TISS-BALM, Leader, CSAR), Dr. Mark Salzer (Temple University Collaborative), Dr. Vandana Gopikumar (Faculty, TISS, Founder, The Banyan/BALM), Smriti Vallath (Faculty, TISS-BALM, Clinical Psychologist The Banyan), Dr. Christina Borba (BUSM/BMC), Dr. David Henderson (BUSM/BMC)

8. CONCLUSIONS AND FUTURE PLANS: As previously noted, much of the data obtained for this study derived from secondary data sources and case manager reports, which is prone to recall bias. Despite this limitation, this comparative research study aimed to provide preliminary data on the sociodemographic profiles of patients with SMI in two different health systems. The Banyan/TISS-BALM and the BUSM Department of Psychiatry plan to continue working collaboratively to build capacity for mental health research. In addition, we anticipate that the continued collaboration and evidence base established through this project will allow us to apply for additional external funding to develop and test the effectiveness of a trauma-informed mental health intervention for homeless individuals with SMI in the Indian and American contexts.