At the heart of the Caswell Diabetes Institute’s (CDI) mission is a commitment to advancing not only the science of diabetes but also the lived experiences of those navigating the condition every day. Central to this mission is the Caswell Diabetes Institute Patient and Family Advisory Council (PFAC)—a group of dedicated individuals living with diabetes or caring for someone who does. Together, they offer critical perspectives that inform our research priorities, shape care delivery, and spark meaningful change across the diabetes community.
Over the past year, the PFAC has taken bold steps to address some of the most pressing yet often-overlooked aspects of life with diabetes: stigma, emotional distress, diabetes education, and the critical role of caregivers.
Confronting Stigma and Addressing Diabetes Distress
In collaboration with Dr. Briana Mezuk and Dr. Kevin Joiner, the PFAC provided input to initiatives to elevate the voices of those affected by diabetes-related stigma. Council members shared deeply personal experiences of judgment and blame, whether through harmful assumptions, language, or interactions in clinical settings.
The Council helped design a new initiative focused on diabetes distress. The Caswell Diabetes Institute Mental Health Program, led by Dr. Mezuk, addresses the emotional and psychological burden of managing this lifelong condition. Drawing on PFAC insights, the program developed surveys, educational materials, and training for both healthcare professionals and patients. These resources, which could be implemented across Michigan Medicine, aim to strengthen communication, build empathy in care delivery, and connect patients with valuable mental health supports, including peer programs. As PFAC member Ruth shared at the July meeting, “I want good information and to learn from others living with diabetes about how to be informed, but not frightened.”
Their contributions are already informing clinical screening tools and will continue to influence care models that more fully integrate behavioral and emotional health support into the diabetes care continuum.
Championing Caregivers Through a New Pilot Program
Recognizing the often-unseen role of family caregivers in supporting people with diabetes, the PFAC partnered with the MEND Diabetes Education Program and the Michigan Health and Hospital Association (MHA) to develop and launch a caregiver support pilot program. This initiative aims to equip caregivers with tailored education, community resources, and strategies to support their health while caring for others.
The program was recently featured on the MHA “Voices of Care” podcast, helping to raise awareness statewide about the unique needs and strengths of family caregivers. The pilot stands as a promising model for integrating caregivers into diabetes care planning and education.
Recognizing Leadership and Impact
The remarkable dedication of PFAC members was recently celebrated by the Michigan Medicine Office of Patient Experience through its annual JOY Awards, which honor volunteer patient and family advisors who have gone above and beyond to promote and advance patient and family-centered care principles throughout Michigan Medicine. Council member Amy Ohmer received the top JOY Award in recognition of her tireless advocacy and leadership, while Alice Train was named a finalist for her exceptional contributions and passion for improving care and education for people with diabetes.
These honors reflect the powerful impact that patient and family advocates are having, not only within CDI but across the health system.
Our Commitment to Patient-Engaged Innovation
The work of the CDI Patient and Family Council exemplifies what’s possible when those with lived experience lead the way. Their advocacy ensures that the voices of people with diabetes and their families are not only heard but also actively shape research agendas, improve clinical practices, and influence institutional priorities.
As CDI continues to expand its patient-engaged research and outreach efforts, the Patient and Family Advisory Council stands as a vital partner in building a future where empathy, equity, and whole-person care are at the center of every interaction. Please contact CDI at MichiganDiabetes@umich.edu if you’d like to bring your diabetes care or research questions to our team of patient and family experts.