Meaningful Engagement of People Living With Noncommunicable Diseases: Challenges and Opportunities

Abstract

Meaningful engagement of people living with health conditions means actively incorporating them in all stages of health decision-making. Despite efforts by global health agencies and governments towards meaningful engagement of people living with noncommunicable diseases (PLWNCDs), many opportunities for participation are tokenistic. PLWNCDs often report feeling excluded from technical discussions and outnumbered by other stakeholders. Participation in decision-making is a human right, and PLWNCDs must continue advocating for a “nothing about us without us” approach. They should be respected as decision-makers with voice, agency, voting power, rights, and duties. This article highlights four key themes: (1) both tokenistic participation and exclusion of PLWNCDs from technical discussions are still common; (2) the “patient” label implies passivity and can perpetuate limited participation, whereas the identifier of PLWNCDs connotes valuable knowledge associated with lived experience; (3) meaningful participation of PLWNCDs in health decision-making processes should be considered a human right; (4) PLWNCD should be empowered to continue to advocate for inclusion and be respected as decision-makers.