To help make the Blueprint and the concepts outlined here more tangible, the National Health Council (NHC) partnered with the Arthritis Foundation to embed a use case from the Arthritis Foundation’s INSIGHTS program, a community-based patient-reported outcomes (PRO) program created in partnership with patients. Over the course of 2 years, the Arthritis Foundation created and launched INSIGHTS to capture experiences and input from people with arthritis.
Arthritis Use Case
While not an example of a PC-CIS because they do not yet exist, the steps taken to create the INSIGHTS program reflect many of the principles and methods key to developing a PC-CIS, including patient leadership, and iterative, meaningful patient engagement at each stage of a project or initiative. Throughout the Blueprint, you will find links to relevant aspects of the use case to use a reference.
The later stage of the Blueprint development involves working with patient-advocacy organizations to pilot the creation of PC-CIS for their community. As these pilots are completed, descriptions and lessons learned will be added to this document.