Meaningful involvement of people living with NCDs to strengthen primary health care and UHC

NCD Malaysia has played a key role in engaging people with lived experience nationally, building their capacity to become spokespersons and advocates, and has advocated for institutionalizing meaningful involvement at the highest level of decision making.

In 2022, NCD Malaysia developed a set of indicators to support community-led monitoring in Malaysia. A comprehensive guide was developed with detailed indicators (aligned with SDG 3.4) and a role for communities and people living with NCDs in the process. The guide was then used in 2023 to deliver training and collect data at a pilot facility in Penang. The report was then shared with local stakeholders to emphasize key findings, enabling attendees to recognize common issues related to the provision of health in the community and track the process of delivering UHC on NCDs using the determined indicators. The process received support from the All-Party Parliamentary Group for SDGs, who committed to integrate these indicators into their projects for different constituencies across Malaysia.

In 2023, NCD Malaysia successfully initiated a national conversation to institutionalize meaningful involvement of people living with NCDs within policy making discussions at the Ministry of Health (MoH). This led to the development of a Memorandum of Understanding (MoU) between MoH and civil society organisations (CSOs) representing people living with NCDs. The MOU was finalised and approved in 2023 and provisions collaboration between MoH and CSOs on a) Community-based health promotion, advocacy, and awareness activities; b) Health screening for non-communicable diseases; and c) Comprehensive capacity-building training modules in the field of NCD prevention and control. The MoU provisions formal dialogues at national and state levels to share concerns, and provide input on people-centered responses related to NCD prevention and control.

"Meaningful involvement is always thought of at Ministry of Health level, the highest level of health-related decision making in the country. However, service delivery happens at the primary health care level, so if communities are not engaged in monitoring and evaluation to determine what is working and what the gaps are, we cannot expect maximum benefits from the nation’s health investments. How many resources are available is an important question but what matters more is how these resources are utilized. The latter point deserves greater scrutiny and community-led monitoring of health centers will help provide the needed answers.”

Dr K. Thiruchelvam, lived experience advocate, NCD Malaysia