Is Your Organization Interested in Developing a Patient-Centered Core Impact Set?

By: Silke Schoch, Senior Manager, Research & Programs

In 2022 the National Health Council (NHC) released its Blueprint for Developing Patient-Centered Core Impact Sets (PC-CIS). The Blueprint defines a PC-CIS as “a standardized, patient-derived and patient-prioritized list of the most important impacts a disease and/or its treatments have on a patient’s health and daily life, and that of their family and caregivers.”1 The Blueprint has seven development stages that include:

  1. Background and Overview
  2. Planning
  3. Gathering Impact Data from Patients
  4. Prioritization by Patients
  5. Gathering Impact Data from Others
  6. Prioritization by Patients and Others
  7. Assembling the PC-CIS

As the next stage in this initiative, the NHC is interested in working with patient advocacy organizations and others that seek to implement the PC-CIS Blueprint. Blueprint implementation may have different project timelines depending on the organization’s access to up-to-date patient impact data. For example, PC-CIS Blueprint implementation can take less time and be less costly for organizations that have quality patient-centered data. Companies can use the “Is It Good Enough?” tool to assess how patient-centered their current data is.

If you are interested in implementing a PC-CIS, please reach out to Silke Schoch, Senior Manager of Research & Programs at

If you are interested in sponsorship of the Patient-Centered Core Impact Sets initiative or other patient engagement programs please contact, Mary Crowther, Manager of Membership & Development, at


National Health Council. Patient-Centered Core Impact Sets Blueprint. 2022. At: