Elaine Chan, Lecturer, International Medical University (Malaysia)

Elaine’s research question is “Does community-empowered technology-mediated personalized interventions for pre-diabetic/diabetic individuals improve health outcomes and quality of life of an urban poor community where access to diabetic care and prevention is lacking?”

A socially disadvantaged community is selected for this research which would represent a typical urban poor community in Malaysia living in Project Perumahan Rakyat/PPR (Housing Project for the People) located in Lembah Pantai, where diabetes and obesity is the highly prevalent and with the lack of easily accessible healthcare facilities, these communities continue to be driven in the vicious cycle of not being able to help themselves.
University researchers and community members are first engaged in a multilevel, multi-session , group discussions to share and reflect their diverse past and current experiences and involvement in community-engaged participatory research to better understand conducive approaches to engagement, individual and local community culture, their knowledge, attitudes and behaviors towards community- participatory action research; towards health (and specifically diabetes), consequences of disease,; towards willingness to change for improvement through collaboration which is driven by community empowerment and technologically-facilitated. Attention will also be given in exploring community leadership of that community, power influences and family/community inter-relationship which will provide insights into role perspectives in the planning, implementation and evaluation of the research throughout. Further exploration is scheduled for a on-site health pre-screening of the community to identify individuals with pre-diabetes/diabetes. Individuals and their families who are interested to participate in the study will be identified through a healthcare carnival, local health-screening center and through home visitations. These individuals will have their diabetes/pre-diabetes status confirmed through clinical examination and laboratory investigations.
The pre-screening data (quantitative and qualitative data) will be further analysed to determine the associated risk factors. The confirmed pre-diabetic/diabetic individuals will then be selected for community-based behavioral interventions. The interventions will be monitored using the diabetic management application (App) that is currently being developed. The main goal of this app is to provide an instant overview of users’ health status and to connect the users within the community and with medical experts in providing holistic management of diabetic with targeted intervention that is personalised to the individuals.

Based on the brief framework provided above, the data to be collected is community-generated facilitated by the use of the app. Community members are empowered to drive the mutually agreed plan and execution. The effectiveness of the app-directed interventions will be reviewed annually based on targeted outcomes.

Community-empowered interventions can deliver culturally appropriate health education which can improve self-care compliance and adherence to self-management practices at affordable cost. These interventions may also help improve self-management of diabetes by addressing barriers encountered in both facility-based approaches and individual-based approaches. However, interventions focused on didactic education to improve disease knowledge alone are not sufficient to change behavior and sustain behavioral management of diabetes. Strategies that integrate counseling or behavioral change are necessary for sustainable impact. The use of technology and effective information management that are applied in a personalized way to the individual’s particular needs could further help users to achieve improved diabetes control with greater safety. This includes community-empowered data generation, story-telling for behavioral change and community-driven peer support.

Overall, Elaine hopes that the capacity and sustainability of this proposed framework will be enhanced when goals are shared and health outcomes are achieved. Therefore, the project is likely to continue to have a local impact long after the researchers leave.