“One of the main takeaways is the fact that the community has such a huge say and can be empowered to assist in the changes that impact us. Change in a system cannot be from the top down. It can come from any status, any level, and can be wide reaching—whether doctors or patients—to make change.”

--Community representative for CaReQIC

The idea of engaging people affected by systems to make changes, such as bringing in those living with an illness to improve health care or students and families to improve education is often seen, at best, as a “nice to have.” At worst, engaging people with lived experience is perceived as an inconvenience. But, systems are designed by people and engaging those affected by a system is essential to improving it.

Experienced improvers know this. We see, time and time again, that coproduction—the interdependence of people at all levels of a system collaborating as equal partners—not only improves outcomes but can also break down stigma and build empathy between those working in a system and those who are most vulnerable to its effects. When done successfully, coproduction creates the information, knowledge, and know-how to generate equitable outcomes.

This month, we published a paper that proves just that. “’Nothing For Us Without Us’: An Evaluation of Patient Engagement in an HIV Care Improvement Collaborative in the Caribbean,” written with partners from the University of Washington, I-TECH, C-TECH, and the Jamaican Ministry of Health, explores the results of an improvement collaborative in the Caribbean. The collaborative, called Caribbean Regional Quality Improvement Collaborative (CaReQIC) aimed to improve HIV care in partnership with patients via a program built on the foundations of coproduction.  

Prior to the collaborative, health care providers sought minimal input from the people in their care, least from the most vulnerable people living with HIV—sex workers, people living unhoused, and men who sleep with men. Stigma around this condition and discrimination against this population created a context where learning from those most impacted by the system required particular care.

Following the development of the collaborative and iterative cycles of improvement, we saw incredible results, not only in the quality of care people experienced, but also in how patient input was collected and used, the empowerment of patient leaders, and the empathy developed between patients and providers. Moreover, the partnership of providers and patients at an equal status broke down the stigma against people living with HIV that the providers often carried, consciously or unconsciously. Coproduction helped break down the “us vs them” mentality that can develop in health care settings to foster sustainable improvements in the care of patients living with HIV.

We invite you to read the full paper and learn from our experiences in the Caribbean. While this example describes improvement in a healthcare setting, the foundations of coproduction are the same in education, food security, criminal justice, and more. For more information about the foundations of authentic coproduction, download our toolkit.