The People Who Know Critical Illness Best

The people who understand critical illness best are often the least represented in conversations about how care should be improved.

That is why EECC Global recently brought together the first members of CRISP (Critical Illness Survivors, Patients and Relatives), a new group that will help shape our work through the experiences of those who have lived through critical illness themselves or supported loved ones during it.

While patient involvement is becoming more common in healthcare, it remains unusual for a global research and implementation initiative to establish a dedicated group like CRISP. For EECC Global, it reflects a simple belief: the people most affected by critical illness should have a voice in how care is improved.

During the inaugural meeting, members from Dar es Salaam and Songwe regions in Tanzania shared personal experiences as survivors of critical illness and relatives of critically ill patients. Their stories revealed common themes of fear, uncertainty, and appreciation for healthcare workers. They described how they felt powerless in the face of critical illness, and a system that was not prioritising their vulnerable situation quickly enough.

These experiences reinforced why Essential Emergency and Critical Care (EECC) is needed. EECC focuses on ensuring that every critically ill patient receives the basic lifesaving care they need, regardless of where they are treated. The gaps described by CRISP members are the very gaps that EECC seeks to address.

The group also explored how members can contribute to research, advocacy, and community awareness activities. There was strong enthusiasm for ensuring that the perspectives of patients and families are represented across all aspects of EECC Global's work.

This first meeting was only the beginning. Over the coming months, CRISP will continue to grow, develop its activities, and play an increasingly important role in shaping research and advocacy around critical illness.

For EECC Global, CRISP is more than a discussion group. It is a commitment to listening, learning, and ensuring that the voices of patients and families help guide the future of essential care.