The National Health Council (NHC) aspires to ensure patient centricity in our health care ecosystem by Advancing the Development of Patient-Centered Core Impact Sets. A PC-CIS is a recognized set of standardized impacts from a disease and/or its treatment that patients report as important to them. The term “impacts” includes health outcomes, such as what would be found in a core outcome set, and any other patient experience information (e.g., financial- or caregiver-related burdens) patients might report as important.
As a result of this initiative, the NHC will produce a publicly available Blueprint, which will:
A consensus-based, common Blueprint will establish standardized approaches and methods for developing PC-CIS, highlight good practices and potential applications, and identify needed or existing support tools.
The NHC has received Phase One funding to begin the PC-CIS initiative from two PC-CIS Initiative founding partners, the Innovation and Value Initiative (IVI) and the EveryLife Foundation for Rare Diseases.