Exploring the potential of civic engagement to strengthen mental health systems in Indonesia.

Psychosis is ranked 11th among the top 25 causes of disability worldwide, and has serious personal and financial consequences for individuals, their families and the economy, including reduced life expectancy, social exclusion, poor quality of life, and poor health amongst caregivers. In Indonesia, mental health systems are struggling to meet the needs of people with psychosis; more than 90% of people with mental illness do not get any treatment and Indonesia has the highest rate of years of life lost to disability or early death from Schizophrenia than any other country in the world. This, combined with low health literacy (poor knowledge of mental health) and high levels of stigma within the general population has resulted in tens of thousands of people of people being illegally chained up ('pasung') in the family home.

Civic engagement, a core part of the WHO global health strategy, could help address these challenges. The benefits of civic engagement have been demonstrated across the world, and include improved access to, and quality of care, reduced stigma, better outcomes for service users and reduced costs. In a health systems context, civic engagement is a 'bottom-up' approach in which service users and their families become actively involved in the design and delivery of health services. It recognises 'lived experience' as an important and valuable form of expert knowledge, and so strengthens health systems by using it alongside clinical or scientific expertise in decision-making, leading to the development of people-centred services.

As a rapidly developing middle income country, Indonesia's mental health system is expanding. This early stage of development presents a unique opportunity for civic engagement to shape and strengthen these emerging systems, and ensure they are designed around the needs and preferences of the people they aim to serve. However, our understanding of the pathways through which civic engagement might operate in Indonesia is limited. Our study aims to address these gaps in knowledge and develop a systems level, culturally appropriate civic engagement framework to strengthen local mental health services. People with psychosis and their carers will receive training in research methods and will be involved in all stages of the project.

The study will take place at two research sites (Jakarta and Bogor), which represent different health systems and urban/rural contexts. It will be implemented in four phases; Phase 1, a systematic review of research studies, will identify the range of approaches to civic engagement implemented in South East Asia, and review current evidence around the use of these approaches. Phase 2 will be a social network analysis to map the main sources of collaboration and evidence used by stakeholders when making decisions in mental health services and will identify opportunities for civic engagement. In phase 3 we will conduct interviews with key stakeholders across the health system, including, policy makers, clinicians, service users and carers, to explore their views of civic engagement and how it might work for people in Indonesia. In Phase 4 we will hold a series of synthesis workshops with local stakeholders to present our findings and co-produce a testable, culturally appropriate civic engagement framework and implementation strategy. We will also identify key questions/topic areas for a larger evaluation of this approach. During these workshops film and video-interviews will be used to capture important and impactful thoughts and messages amongst stakeholders.

Our project will increase potential for civic engagement in Indonesia. It will build research capacity, and provide opportunities for more 'user focussed' research. We will develop a grant application for a rigorous evaluation of the civic engagement strategy we develop, and a strong Indonesian research group, with the knowledge, skills and experience required to lead such a study in the future.

The aim of this study is to develop a testable systems level, culturally appropriate civic engagement framework for use in Indonesia to strengthen local mental health services. People with psychosis and their carers will receive training in research methods and will be involved in all stages of the project.

Indonesia has the highest rate of years of life lost to disability or early death from Schizophrenia than any other country in the world. More than 90% of people with mental illness do not get any treatment and tens of thousands of people with psychosis are illegally detained ('pasung') in the family home. Civic engagement, a core part of the recent WHO global strategy, has the potential to address some of these challenges through the development of person-centered models of care.

This mixed methods study, underpinned by a realist approach, will comprise four phases: Phase 1, a systematic review of peer reviewed studies and grey literature, will identify the range of approaches to civic engagement implemented in South East Asia, and review current evidence around the use of these approaches. Phase 2 will be a social network analysis to map the main sources of collaboration and evidence used by stakeholders when making decisions in mental health services and will identify opportunities for civic engagement. Phase 3 will comprise interviews with key stakeholders across the health system, including, policy makers, clinicians, service users and carers, to explore their views of civic engagement and how it might work for people in Indonesia. In Phase 4 we will hold a series of synthesis workshops with local stakeholders to present our findings and co-produce a testable, culturally appropriate civic engagement framework and implementation strategy. During these workshops observational film and video-interviews will be used to capture important and impactful thoughts and messages amongst stakeholders.

We will develop a testable co-produced, evidenced-informed framework for civic engagement across mental health systems in Jakarta and Bogor. If implemented, this will strengthen local services by developing person-centered models of mental healthcare, which have been shown to produce a range of benefits for services, service users and their families, including improved access to, and quality of care, increased health literacy, reduced stigma, better outcomes for service users and reduced costs. Increasing the involvement of people who access mental health services and their families in decisions about their care can itself have a positive impact on health and wellbeing by fostering feelings of hope and empowerment and by increasing engagement with services. This will be a freely available testable resource for managers and policymakers, and its impact could therefore be wide ranging if implemented/adapted in other systems across Indonesia and South East Asia.

Our project will increase knowledge of, and therefore potential for, civic engagement amongst policymakers, NGOs, clinicians, service users and families at each study site. Our project will also provide further opportunities for civic engagement by strengthening collaborations between these groups (e.g. during phase 4), and our work and training with local service users and their families will inform and empower individuals to strive for a more active role in service delivery.

This project will build research capacity in Indonesia through the mentorship and training provided to Indonesian researchers, clinicians, people with psychosis and their families, which will increase their research skills and knowledge. Mentorship will also be provided to the PIs, contributing to the development of highly skilled health systems researchers in the UK.

We will develop service user/carer researchers, and so build capacity for 'user focussed' research in Indonesia. We will provide opportunities for service users and carers to be involved in data collection and analysis, and presentation of our findings at conferences. This will benefit these 'lived experience' researchers who will learn new skills (e.g. communication, writing or analytical skills) transferable to other areas. Upskilling people with lived experiences of mental health problems, and those who care for them, so they are able to act as research advisors, or become researchers themselves, can also benefit academics and clinicians by improving the quality of health systems research and enhancing its impacts (e.g. by ensuring protocols and procedures are realistic, ethical and culturally sensitive and by ensuring the research addresses the concerns and priorities of the people it aims to help)

Our study findings will generate important new knowledge that could (i) be used by policy makers and service managers to inform the development of the emerging mental health services at our local sites, across Indonesia and South East Asia (ii) be used by frontline professionals to build on current ways of working and develop more person centred models of care and care planning (iii) advance current understandings of approaches to civic engagement, the culturally acceptability of these approaches in in South East Asia, barriers and facilitators to the implementation of civic engagement and its potential impacts on emerging mental health systems in low and middle income countries, benefiting academics and researchers working in fields of civic engagement and health systems research.

A further potential academic impact is the subsequent grant applications (at least 3) we will develop to build on this work, including a rigorous evaluation of our co-produced civic engagement strategy.