“…information and communication are often used interchangeably, but they signify quite different things. Information is giving out; communication is getting through.” Sydney Harris, The Chicago Sun-Times
By Diane Drago, PFCC Advisor
Communication. Information. Education. These themes are at the heart of nearly every discussion of patient- and family-centered care (PFCC). The recently formed MEND PFCC Advisory Group and the ongoing work of the Diabetes Transition Clinic are outstanding examples of how these themes can be encompassed in patient care. The Division of Metabolism, Endocrinology & Diabetes (MEND) has been providing expert care for patients with a large number of endocrinological and metabolic conditions.
MEND works with 1,500 to 2,000 adult patients each year through its Diabetes Education Program, administering intensive individual counseling and group classes on diet, nutrition, insulin management, modification of risk factors and weight control. The Diabetes Transition Clinic was established in 2010 as a partnership between MEND and Pediatric Endocrinology, with the goal of making the transition from pediatric to adult care a seamless process for diabetes patients who have turned 18. But, were these programs just providing patients information or was there true communication taking place among patients, families and providers? Sacha Uelmen, director of MEND’s Adult Outpatient Diabetes Education Program, recently shared her insights on this issue.
When Sacha joined MEND eight years ago, patient input was required for the diabetes education program to be ADA-certified. To meet this requirement, MEND simply had an annual advisory meeting with two to four patients. While this input did help guide some programming, Sacha soon came to believe that “patient input had to become more robust.” But, how? Fortunately, a series of seemingly separate developments coalesced. MEND and the Transitions Clinic are now making great strides in enhancing their PFCC efforts and integrating the patient and family voice into all they do. In the past year, they have recruited nearly 20 patient and caregiver advisors to work with their teams.
The Separate Developments
• Danielle Rogosch, RN was an inpatient nurse who approached Sacha about the diabetes education materials being used on her floor (from the internet) to help their patients with diabetes. She asked Sacha for help on how best to enhance and share this information. Her work inspired Sacha and others at MEND and now Danielle works in MEND with the Adult Diabetes Education Program and obtained her CDE (certified diabetes educator) credential.
• MEND had developed a diabetes patient handbook—without any real patient input. It was beautifully written and graphically designed, but Sacha decided to have patients review it before publication. The result? Virtually every section of the book was rewritten based on patient input. This even included the cover, which had been designed as a beautiful place setting—with an empty plate. Diabetes patients were very clear that a message of “no food” was not they wanted to see!
• An in-service to MEND by former PFCC program manager for adult services, Celeste Lee, just two years ago, helped forge a strong working relationship between the offices. Sacha shared that “…we didn’t even know the PFCC office existed before Celeste made her presentation.” The MEND staff was delighted to know that PFCC staff is available to help support their efforts, as well as onboard and train patient and caregiver advisors.
• Dr. Jennifer Wyckoff, medical director for the Adult Diabetes Education Program, has taken an assertive lead to integrate the patient and family voice in the MEND Division. Vicky Kihn, one of the PFCC diabetes advisors for MEND praised the efforts of Dr. Wyckoff, as well as Sacha Uelmen and Heather Fazio, project manager at MEND, as the people who helped inspire her own participation as a PFCC advisor.
The Resulting Changes
• PFCC Advisory Group: Sacha has witnessed a true culture change in diabetes education at MEND. The patient voice is becoming integrated into all phases of their work. “We want our advisors to be involved in everything we do.” The MEND PFCC Advisory Group was formed in 2015 and will begin their work in earnest in 2016.
Advisor Vicky Kihn has witnessed these changing relationships and is greatly encouraged by the creation of the Advisory Group. She is a Type II diabetes patient who has taken part in several of MEND’s education classes. It was through her classes that she met Sacha, who invited her input on the education program. As a member of the new Advisory Group, Vicky has a particular interest in diabetes research and communication between patients and providers. “Patients are often afraid when they learn they have diabetes,” she said. “We need to have a strong support system and more personal interactions with our providers.”
• Care Teams at MEND: Under the coordination of Jennifer Wyckoff, MD, the MEND Division has moved from “first-come-first-served” patient appointments to care teams. The seven nurses and five dietitians have each been paired with MEND physicians to form these teams. Each patient now has their own care team and sees one or more people from that team at each appointment, greatly enhancing the ideal patient experience—and going to the heart of Vicky’s points. There have been challenges as faculty and staff had to revamp traditional working scenarios and the mere use of physical space in the clinic had to be re-thought. But, Sacha feels that faculty and staff are receptive to the changes, especially as they see the benefits to their patients. “If there is a dispute among faculty and staff, the patient is at the heart of it,” said Sacha.
• Diabetes Education Classes: Classes and handbooks are being revamped with the help of advisor input.
• Transition Clinic: Since 2010, as pediatric endocrinology patients approach 18 years of age, the Transition Clinic works to encompass the last pediatric visit with one at the MEND Adult Clinic. The patients and families are introduced to the adult care practice, with an emphasis on adolescent diabetes-related topics. The approximately 40 patients seen each year range in age from 16 to 22. The Transition Clinic is forming its own advisory group, including some of the transition patients. Plans are being developed to update information provided to patients, referral guidelines and the coordination of visits.
When asked what they would like most to share with UMHS faculty and staff, both Vicky and Sacha circled back to the theme of communication. From Vicky: “Clinics need to disseminate information better, both about research developments and diabetes education. We need personal attitudes in our communications.” And from Sacha, a recommendation about engaging patients and families who will make a difference in PFCC: “Don’t be afraid to look for people who can make with a difference with constructive feedback…not just your favorites!”
“The single biggest problem in communication is the illusion that it has taken place.” George Bernard Shaw