Why patient engagement is actually grief work (28 October 2024)

Summary

Patient engagement is often described as the process of involving patients in healthcare research, decision-making, and co-design. But there’s a deeper layer we rarely discuss: patient engagement is actually grief work.

It’s more than just participating in a study or sharing opinions—it’s an act of processing loss. Every time a patient shows up, they bring a layer of grief with them: grief for their old life, their expectations of health, the trust they once had in their body, and the hope they had for the healthcare system.

And here’s the thing: this grief doesn’t just “go away.” Even if a condition stabilises or a diagnosis is resolved, the grief for the person they were before remains.

For those of us working in patient engagement, research, or co-design, recognizing this grief is essential. Patients don’t leave it behind when they participate; it’s with them every day. Understanding this is key to creating an environment that is truly supportive and inclusive, writes Linxi Mytkolli in a LinkedIn article.