Title: NIHR Global Health Research Group on Psychosis Outcomes: the Warwick-­India-Canada {WIC} Network, The University of Warwick
Funder: Department of Health and Social Care

Abstract: Our aim is to reduce burden of psychotic disorders in India. We will improve patient outcomes by applying evidence-informed culturally-tailored interventions to clinical care, provide high quality research evidence to policy makers, exploit the potential of digital/mobile technologies, and build research and innovation capacity in India, UK and Canada. INSTITUTIONAL STRENGTHS University of Warwick (UOW) is ranked 7th for research in the UK. The University’s Global Research Priorities Programmes includes International Development and Science and Technology for Health and applies UOW’s academic excellence to global challenges including early diagnosis and treatment in LMICs. Warwick Medical School (WMS) led three major UK reforms in the last two decades: early intervention in psychosis, youth mental health, and ethnic minority mental health. Warwick Business School has expertise in implementing evidence into practice in complex healthcare systems. The Schizophrenia Research Foundation (SCARF) is a Chennai-based non-profit voluntary organisation providing care to patients with psychoses and a WHO Collaborating Centre for schizophrenia research, the only such Asian NGO. It is recognised as a leading research organisation by the Indian Government’s Department of Science and Technology. It has successfully translated research into improved clinical practice and outcomes with models of community and home-based interventions. All India Institute of Medical Sciences (AIIMS), New Delhi was established in 1956 to develop undergraduate and postgraduate medical education and research (2000 scientific publications p.a). Department of Psychiatry has provided postgraduate training programme since 1962 and hosts the National Drug Dependence Treatment Centre, a WHO Collaborating Centre. McGill’s mental health research is a prominent strength, including its leadership of a Canada-wide youth mental health service reform, ACCESS Open Minds, and PEPP-Montréal, Canada’s premiere research programme for FEP, located in a WHO Collaborating Centre for Research and Training in Mental Health. McGill’s Global Health programme prioritises enhancing research capacity in LMICs. PARTNERSHIPS We share interests in biopsychosocial interventions in psychotic disorders and a strategic vision to reduce the burden of psychotic disorders. We have complementary expertise in psychosis care, community psychiatry and youth mental health. Existing collaborations include: • UOW-McGill: International partnerships: International Association for Youth Mental Health and Early Intervention in Psychosis movement • UOW-AIIMS: World Association of Social Psychiatry Conference 2016, New Delhi • McGill-SCARF: Joint research on outcomes in psychosis, especially functional recovery • McGill-SCARF: Biennial International Conference on Schizophrenia. PROGRAMME OF ACTIVITIES RATIONALE: Psychotic disorders afflict the young, rob them of productive years, cause huge suffering, and place enormous burden on families and society. The most significant reform in mental health care since deinstitutionalisation has been early intervention in psychosis services, shown to be clinically and cost-effective in reducing duration of untreated psychosis (DUP), and enhancing symptomatic and functional recovery, enabling young people returning to education or work [1,2,3,4]. With a 1.2 billion population and 5,000 psychiatrists, India has a large pool of undetected and untreated psychosis patients and a 75% treatment gap in psychotic disorders [5]. Evidence-based packages of care have been piloted but delivery of treatments is a challenge [6,7,8]. Even when patients access care, there is no continuity; treatment is sporadic and focused on symptomatic control rather than recovery [9]. WINDSOR will create capacity for the early identification and treatment of psychosis patients who don’t have access to mental health care. Such first-episode psychosis (FEP) cohorts offer unique opportunities to explore socio-cultural and neurobiological influences on outcomes in psychosis. OBJECTIVES: In five work packages and two cross-cutting themes WINDSOR will: a) develop and evaluate evidence-informed psychosis interventions for sustained health improvements for these vulnerable patients b) determine pathways of care and develop early detection strategies to reduce DUP c) create a dataset of well-characterised inception cohorts of FEP with ‘research readiness’ systems and processes d) investigate efficacy and cost-effectiveness of novel community care models including digital and mobile applications e) build capacity by providing a strong multidisciplinary research and training programme. WORK PACKAGES (WP) WP1: Partnerships, collaborations and stakeholder engagement (Lead Padmawati): detailed in Partnerships and Collaborations section below WP2: Protocol-based assessment and management (Lead Sood): After a detailed understanding of current clinical practice in partner sites and using established expertise at Warwick and McGill (10,11,12], we will modify protocols from the NEDEN study [10] the largest cohort of FEP in the world, ensuring valid and reliable translation of assessment tools. We will refine existing psychosocial intervention protocols, with particular emphasis on family interventions. An FEP register will be maintained at both SCARF and AIIMS. WP3: Understanding pathways to care (Lead Singh): Using methodology for case-ascertainment and care pathways from the NIHR ENRICH Programme [13,14], we will explore a nuanced understanding of cultural attribution of psychosis symptoms and help-seeking [15] and determine modifiable factors that contribute to DUP and their correlates. COMMISSIONED PROJECTS: Two projects have been identified by local partners that address critical local issues and have high impact potential: WP4: Mobile technology to ensure continuity of care: (Lead, Chadda): In the absence of state provision, families initiate treatment, procure and supervise medicines and provide psychosocial support - opportunities for education, vocation and recreation. Over 90% of patients stay in community with families [9]. The stress of caregiving adversely affects carers’ physical and mental health [16, 17, 9]. India has 943.9 million mobiles with a tele-density of ~75% and share of ~97% of total telephones [18]. Studies have emerged from high income countries on mobile technologies in psychosis [19] but are lacking in LMICs [20]. Our survey shows that 87.7% of patients have mobile phones [21]. This project will deliver a mobile application for home-based psychosocial recovery, strategies for reducing carer burden, and determine its clinical and cost-effectiveness. WP5: Early detection using a community awareness programme (Lead Thara): Along with lack of services, other impediments to care are stigma, lack of awareness and culturally-mediated explanatory models that lead to help-seeking from faith institutions [14] with consequent long DUP. This scaleable and replicable programme of community awareness and early detection aims to: a) identify untreated cases of psychosis within a Chennai catchment area; b) pilot a school based programme of screening; c) assess the effectiveness of using community resources - teachers, peers and youth groups - to provide psychosocial intervention and d) determine its clinical and cost effectiveness. CROSS CUTTING THEMES (T) T1: Economic evaluation (Lead Madan): We will address the limitation of health economics research in India. Specifically we will develop decision-analytic economic models for policy-making and future economic evaluations. New models will draw on contextual Indian expertise, and populated by service use data from SCARF-PEPP longitudinal studies and existing literature. Such data are available in Chennai from 2003 onward. For local capacity development, a three-year Research Fellow in health economics will be recruited, with joint supervision by Madan and an Indian academic with local policy knowledge, and access to specialist training at WMS. T2: Implementation Science (Lead Currie): Despite being the first LMIC to introduce a National Mental Health Programme and with increasing budget for mental health, Indian central and state governments have never used up allocated resources, mainly because implementation is lacking [22]. This ‘implementation science’ challenge [23] receives little attention in India [24]. Standardised programmes of care are difficult to scale in LMICs, partly because the system is too complex to ‘cut and paste’ evidence-based Western programmes [25]. There are additional organisational and management challenges of task shifting, resource re-allocation and delivery in community and home settings [26, 27, 28]. With a newly appointed senior researcher, we will work with our Indian partners to ensure translation of evidence into practice and policy reform [29]. BY SIX MONTHS we will have • Established the governance structure • Created ‘research-ready’ clinical and IT systems at SCARF and AIIMS • Appointed one research fellow each at UoW, SCARF and AIIMS • Hosted a meeting of all applicants and the EAB in India • Finalised methodology for the commissioned projects. See the attached GANTT Chart for medium and long term outcomes. SUSTAINABILITY PLANS The WMS based researcher will identify funding opportunities in global mental health. Using priorities identified by Indian partners and user/carer groups, findings from our pilot and commissioned projects, and burgeoning strength in new methods, we will develop research proposals and commence submitting funding application from the beginning of year 3 so that we have a sustainable platform of externally funded activities. Each successful grant application will increase our research capacity and delivery creating a ‘virtuous cycle’ that takes WINDSOR from strength to strength.

Lay abstract: NIHR Global Health Research Group on Psychosis Outcomes: the Warwick India-Canada (WIC) Network brings together knowledge and expertise of four internationally recognised institutions with a single aim - to reduce the burden of psychotic disorders in India. WIC partners include University of Warwick (Coventry, UK); All India Institute for Medical Sciences (New Delhi, India); Schizophrenia Research Foundation, SCARF (Chennai, India) and McGill University (Montreal, Canada). The partners share research interests and expertise in effective interventions in psychotic disorders and a strategic vision to reduce the burden of psychotic disorders in resource-poor settings. Psychotic disorders are found in every part of the world but majority of individuals with these conditions live in low and middle-income countries, where resources are scarce and access to health care extremely limited. India has a young population - 70% of the 1.2 billion people are under the age of 35 – and evidence shows that some 50 million people in India (5%) have a mental illness, with significant morbidity, mortality, individual and societal costs. Psychosis disproportionately affect young people and cause immense suffering, while placing an enormous burden on families and society. This huge population is served by only 5,000 psychiatrists, so India has a large pool of patients with undetected and untreated psychosis. Even when patients access care, treatment is intermittent, fragmented and primarily focused on crisis management and symptom control rather than recovery. Recent mental health reforms in developed countries confirm that the most significant change since deinstitutionalisation has been early intervention in psychosis services. Such services not only improve outcomes, allowing young people to return to education or work but are excellent value for money. However, the complexity of the Indian healthcare system and differences in cultural context mean that simple ‘transplantation’ of ‘Western’ interventions is well-nigh impossible. Using evidence-based interventions developed in UK and Canada, WIC will develop culturally-sensitive interventions that will expand mental health services to communities that currently have no access. In addition, WIC will create sustainable and much-needed research capacity in Chennai and New Delhi to underpin the ongoing development of better services and provide evidence for policy makers. The objectives of WIC are to: a) develop and evaluate evidence-informed psychosis interventions to make sustained health improvements for poorly-served vulnerable individuals; b) understand pathways of care to develop early detection strategies in India; c) create a dataset of well-characterised inception cohorts of FEP with ‘research readiness’ systems and processes; d) investigate clinical and cost-effectiveness of innovative community care models including digital and mobile applications; and e) build capacity by providing a strong multidisciplinary research and training programme. By exploiting the potential of digital/mobile technologies, WIC will increase access to services, provide interventions appropriate to the culture that will deliver better patient outcomes and provide high quality research evidence to policy makers. Our proposal has the potential to radically transform the life chances of a large numbers of hitherto neglected individuals, while advancing research collaborations between India, UK and Canada.

Research activity codes: 8.5 RESOURCES AND INFRASTRUCTURE (HEALTH SERVICES)
Health categories: MENTAL HEALTH