Diabetes Dialogue: The Role of Patient Voice in Diabetes Management

Few diseases have seen the same emphasis on patient voice as diabetes since the turn of the century. It is not because providers and clinicians lacked an understanding of the pathophysiology or were not developing more optimal treatment methods, but there became a growing recognition of just how substantial the burden of diabetes was on the lives of people with diabetes.

For those without diabetes, it is difficult to comprehend the hundreds, if not thousands, of questions a person with diabetes has to answer about their disease from the moment they wake up until the moment they fall asleep at night. It is because of this that the field has been driven towards, but this change would not have been possible without people with diabetes and their families advocating for the community.

For some, this has been an individual endeavor and, for others, it has been a collaboration resulting in larger organizations dedicating to patient advocacy.

An example of one of these individuals is Renza Scibilia, a person with type 1 diabetes, who launched Diabetogenic—an online blog detailing her experiences with diabetes, which Senza also uses to advocate for person-first language when discussing diabetes and people with diabetes.

An example of an organizational endeavor to aimed at improving the inclusion of patient voice into care is Children with Diabetes. Inspired by his own experience having a child with type 1 diabetes, Children with Diabetes was founded as a nonprofit organization in 1995 by Jeff Hitchcock. Since this time, the organization has led the charge for patient advocacy and improving the care of people with diabetes. Hitchcock’s personal motivation for launching the organization was his daughter Marissa, who was 2 years old at the time of her diagnosis in 1989. Now Marissa Town, BSN, RN, her journey has led to her becoming a certified diabetes care and education specialist and she now serves as the clinical director for Children with Diabetes.

With an interest in learning more about the incorporation of patient voice and advocacy, Diana Isaacs, PharmD, an endocrine clinical pharmacist and CGM program coordinator, and Natalie Bellini, DNP, and endocrine nurse practitioner with R&B Medical Group, invited Scibilia and Town to take part in a special edition episode of Diabetes Dialogue: Technology, Therapeutics, and Real-World Perspectives at the 16th annual conference on Advanced Technologies and Treatments for Diabetes (ATTD 2023).