Living well with a chronic disease: A population-based research programme 

International Principal Investigators

• Professor Martin Webber
  University of York
• Professor Lynette Joubert
  University of Melbourne
• Professor Jacques Joubert
  University of Melbourne
• Dr AT Jotheeswaran 
  World Health Organisation

India Principal Investigators

• Dr Rameela Shekhar
  School of Social Work, Roshni Nilaya, Mangalore
• Fr Saju MD
  Rajagiri College of Social Sciences, Kochi, Kerala

Early Career Researchers

• Dr Nicole Hill
• Meredith Fendt-Newlin
• Sphoorti Prabhu

Duration

• January 2015 - ongoing

Programme summary

The social determinants of health are the conditions in which people are born, grow, live, work and age. Much research has shown the pivotal role social determinants play in chronic disease progression. Our research collaboration was established to explore the impact of social problems which prevent people from accessing or adhering to medical care, or hinder the management of their physical or mental health problems. We believe that addressing these factors may help to close the treatment gap for the leading causes of death and disability in low and middle income countries.

Our collaboration consists of members from India, United Kingdom, and Australia with extensive research and practice experience in epidemiology, applied social science, and neurology. This interdisciplinary approach underpins the social interventions we design and implement to address the social context influencing chronic disease.

Research in India

We have commenced our work in India to examine the relationship between social determinants of health and chronic disease. In India, cardiovascular diseases, diabetes, depression and anxiety account for 53% of all deaths, and contribute toward a substantial proportion of the global burden of disease, at 18% of deaths and 20% of disability-adjusted life-years (DALYs) worldwide (WHO, 2011). These data, however, mask the substantial variation of health in India, where individuals with the greatest need for health care experience the most difficulty accessing services.

Although a range of cost-effective prevention strategies exist, they typically focus on chronic diseases in isolation. However, these approaches are widely at odds with increasing research that most chronic diseases are common and often occur as comorbidities, thus impacting higher health service utilisation, care expenditure and poorer outcomes. Additionally, socio-economic and cultural factors occasionally impede effective treatment. For example, when a man, as head of the family, is diagnosed with an illness he would often think of spending the money for his treatment on his children; a woman, particularly a housewife, may hesitate to even reveal her diagnosis to her family for the same purpose. Immediate action to address the social determinants and scale up culturally-appropriate cost-effective interventions for the effective management and secondary risk prevention of chronic diseases is needed.

Community survey

We recently conducted a community survey, collecting data from a random sample of 2,107 people in two sites in India (Mangalore and Kerala) to examine the social and behavioural factors that contribute to chronic conditions. Our preliminary analysis suggests that of the 1,016 participants from Kerala, 36% have hypertension, 15% high blood glucose levels, 11% are living with depression, and 17% have anxiety. The study also revealed findings indicative of the conditions not being well-managed by those who have received a diagnosis. The effective management of these chronic conditions requires a collaborative effort across the health and social care workforce.

Intervention development and trial

The next study from our collaboration, funded by the University Grants Commission (UGC) and UK-India Education and Research Initiative (UKIERI), aims to reduce the prevalence of four core chronic diseases leading to cardiovascular disease (hypertension, diabetes, depression and anxiety) by integrating health, social care and community services.

With critical skills in connecting individuals, organisations and the acquisition of community resources, we believe social workers are uniquely positioned to support an integrated service-level care model. Service delivery integration occurs at three levels: linking of fragmented services to facilitate referral and collaboration to manage users’ needs; co-ordination of an umbrella system under which health and social care services operate; and full-integration of a single organisation responsible for all services.

In this three-year pilot study, we will focus on service integration whereby social workers will be trained to provide holistic care assessments and planning, case management as single point of entry and personal contact. We will evaluate the feasibility of integrating medical and psychiatric social workers alongside existing Asha and community health workers and using mobile technology to facilitate case management.