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Engaging the Voices of Serious Illness: Nothing About Us Without Us

Engaging the Voices of Serious Illness: Nothing About Us Without Us

2020 – A year of challenges and opportunity. Yes, opportunity! This year provided a special opportunity for our voices to be heard by voting for the candidates, issues, and future we each desire. We exercise our right to be heard when we fill in a ballot. We had the chance to use a very personal power to influence how decisions are made. Our voices were engaged through our vote. 

And as we voted, thousands of adults and children in NC were living with a serious illness, facing challenges and opportunities every day as they manage medications, home care, health care visits, and life. Their struggles and successes are often known only by the caregivers, friends, family and communities that support their needs and issues. 

So how do we make sure the voices of serious illness patients and caregivers are heard? 

The North Carolina Serious Illness Coalition is one group that is leading the way in engaging the voices of serious illness patients, families, and their caregivers. The Coalition is a statewide partnership of leaders and consumers formed to continue the work started by the 2019-2020 NC Institute of Medicine Task Force on Serious Illness Care. The Coalition is developing and implementing action plans that address the 13 Priority Recommendations in the Task Force’s final report. The mission of the Coalition is “To engage a broad range of stakeholders and their perspectives, including providers, consumers, policy advocates, industries, and others, to accelerate the solutions needed to achieve the desired vision for serious illness care.” 

Engaging a variety of stakeholders is no small task, yet, The Coalition already has over 137 members participating in monthly meetings, four unique Work Groups, and a number of educational events. The voices of members represent the daily challenges of serious illness in NC. Their voices are present every time they attend a meeting, provide input on an issue, present an educational program, talk with a legislator, or respond to a request to work on an action step. 

We must continue to initiate opportunities to understand and learn from patients and caregivers, to promote their involvement in designing solutions for patient-centered and equitable serious illness care NC, to appreciate their unique expertise and perspectives. Engagement starts with creating the space and time to listen and learn. Engagement is sustained when what we heard informs the way in which serious illness care is improved in NC. Engagement is achieved when nothing happens without the voice of the patient and caregiver.  

This piece was contributed by Sue Collier.