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Lived experience is indispensable in health decision-making

More and more, Civil society and global health organizations are actively working to elevate the voices of diabetes lived experience communities in global health processes, at scientific conferences, and other platforms where the global diabetes care agenda is being shaped. Much progress has been made, but there is still a long way to go.

This is one of the core messages of a new paper titled, ‘Meaningful Engagement of People Living with Noncommunicable Diseases: Empowering Participation in Health Decision-Making’, authored by one of Life for a Child’s advisory committee members, Mark Barone and Global Advocacy and Policy Manager, Emma Klatman.

Mark and Emma advocate for a sincere integration of the expertise of people living with noncommunicable diseases (PLWNCDs), emphasizing the need to move beyond symbolic gestures. They stress that decision-making processes must include PLWNCDs with diverse perspectives, varying socioeconomic backgrounds, and representation from different geographic locations. Mark and Emma assert unequivocally that the voices of PLWNCDs should be accorded equal weight alongside industry leaders and influential figures in global health.

“It is high time to move from identifying people living with NCDs merely as ‘patients’ towards recognizing their worth rather as ‘impatients’ who are indispensable and irreplaceable contributors in all phases of decision-making processes.”

The paper explains the importance of destigmatizing, empowering and empathetic language practices when addressing and referring to PLWNCDs. Despite the availability of guidelines promoting such language, adoption remains low, and stigmatizing or disrespectful wording is still common. Increasing the adoption of respectful language and associated behavior can help to reduce hierarchies and power imbalances.

In essence, Mark and Emma establish the advantages of meaningful engagement of PLWNCDs in health decision-making. They provide a roadmap for not only empowering their participation but also advocating for the indispensable role PLWNCDs play in shaping healthcare policies and practices.

You can view the full paper here.

Rachel Clayton Marketing and Communications Manager


Life for a Child USA Inc. is a 501(c)(3) organization EIN 47-4901579.

Diabetes Overseas Aid Fund T/A Life for a Child is a registered charity with the Australian Charities and Not-for-profits Commission.

Life for a Child is managed by Diabetes Australia.

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