The SMEs in the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH-CAHPS) Affinity Group uncovered barriers to patients participating in and completing the ICH CAHPS Survey. The SMEs expressed being over-burdened with survey requests and fear of retaliation for their comments in the survey as two of the greatest barriers to patients not completing the survey. The group created resources to educate patients about the importance of participating in the survey.
If a dialysis patient has a concern or complaint about the care they are receiving at their facility, they have the right to file a grievance through their ESRD Network. This Affinity Group focused on the process of reporting a grievance about their dialysis facility by creating informational resources for patients.
Each year, members of the Patient-Selected Affinity Group discuss relevant topics that are important to kidney patients and identify themes between the topics. For 2016, the group recognized the importance of thriving with kidney disease as an important attribute of kidney patient care. The SMEs identified resources to help patients cope with kidney disease and shared personal stories about how they "thrive" with their disease in the form of selfie videos.
During the 2016 NPFE-LAN Summit at the CMS Quality Conference, a graphic recorder created a visual representation of the discussions that took place throughout the different activities of the one-day meeting with pa