Lisa Littner, MPH, MSW, LISW-S, CHES, Cincinnati Children’s Hemophilia Treatment Center
At Cincinnati Children’s Hemophilia Treatment Center, we value patient and family input on current healthcare experiences and future program initiatives. In recent years we have focused more on increasing patient and family involvement in various areas. We have a patient family advisory council that meets twice a year. During our meetings we update the 12-member council on our current projects and initiatives and get their feedback. The members are predominantly parents of a children with hemophilia and severe von Willebrand’s Disease. We do have one young adult patient on the council and we hope to increase the young adult representation in the future.
Beyond the meetings, we rely on the council to provide feedback on projects throughout the year. One of the council members is on patient newsletter planning committee and meets with our HTC team quarterly. Other members have periodically participated in our quality improvement meetings and have given feedback on our projects.
We love to involve patients and families in giving feedback on our educational projects. We have asked them to review educational materials, an educational website and most recently a car seat sticker. We turn to the patient family advisory council first for feedback and then will also use our parent social media page when wanting feedback from a larger audience.
Getting the opinions of patients and families on our projects and quality improvement initiatives takes a little extra time and can put a project on hold a bit while waiting on a response. However, involving patients and their families has really helped shape our projects and programs so that they are meeting people’s needs and are the best fit for the selected audience.