Project Update! Patient-Centered Core Impact Sets (PC-CISs)

By: Silke Schoch, Senior Manager, Research & Programs 

In January 2021, the National Health Council (NHC) launched a multi-stakeholder effort to create a Patient-Centered Core Impact Set (PC-CIS) Blueprint that the patient community and others can use to develop sound PC-CIS for a specific disease, related diseases, or population.  

A PC-CIS is a patient-prioritized list of impacts that a disease and/or its treatments have on patients (and their families). Intentionally broad, “impacts” include health outcomes and all other related implications (e.g., career stress, out-of-pocket costs, work loss). Please see Figure 1 for more details.  

Figure 1.  

Currently, we have four work groups devoted to developing the Blueprint content. These four groups are focused on different Blueprint sections: 

  • Background  
    • Frames the need for a PC-CIS and discusses how the Blueprint can be used 
  • Methods 
    • Outlines and describes the ideal methodologies for developing a PC-CIS 
  • Resources 
    • Curates a toolkit of supportive materials for creating a PC-CIS 
  • Pilot Test 
    • Describes disease-specific pilots with patient advocacy organizations to test the Blueprint 

In Spring 2022, the NHC will complete preparations, and conduct thorough review and vetting of the PC-CIS Blueprint draft. The Blueprint will be released for public comment in August 2022. 

Even though the project is in progress, there is still plenty of work to do! We are seeking volunteers from non-profit groups to join the work groups. If you are interested, please reach out to 

Industry members and others interested in supporting this project can contact Mary Crowther at