Welcome to the draft “Patient-Centered Core Impact Sets (PC-CIS) Blueprint.” 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 (PC-CIS) to address inconsistencies between what is important to patients versus the information that is typically collected in research and care. A PC-CIS is 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. For Public Comment submission information, please click here.

You can register for the August 17, 2022 Multi-Stakeholder Dialogue on Achieving Patient-Centered Core Impact Sets here.

Background and Overview

Planning

GATHERING IMPACT DATA FROM PATIENTS

PRIORITIZATION BY PATIENTS

PRIORITIZATION BY PATIENTS AND OTHERS

Assembling the PC-CIS

Supplemental Materials

Citation

National Health Council. Patient-Centered Core Impact Sets Blueprint. 2022. At: https://nationalhealthcouncil.org/a-blueprint-for-developing-patient-centered-core-impact-sets-pc-cis/

Acknowledgements:

Thank you to the PC-CIS Advisory Committee as well as the Background, Resources, and Methods workgroups for their contributions and expertise to the PC-CIS Blueprint.

We would also like to acknowledge and thank, T. Rosie Love, MPH, Ph.D. Candidate at the University of Maryland School of Pharmacy, Department of Pharmaceutical Health Services Research, Lori Frank, PhD, Senior Vice President for Research, Policy, and Programs, The New York Academy of Medicine & Jeanne Regnante, Strategic Health Equity Advisor, Tigerlily Foundation, for their inputs and insights into this work.

  • Heather Black, Merck
  • Jennifer Bright, Innovation and Value Initiative 
  • Nicholas Brooke, Patient Focused Medicines Development
  • Laurie Burke, LORA Group, LLC
  • Tim Coetzee, National Multiple Sclerosis Society
  • Maarten de Wit, OMERACT
  • J. Samantha Dougherty, PhRMA
  • Rosalind Fabunmi, Edwards Lifesciences
  • Ryan Fischer, Parent Project Muscular Dystrophy
  • Annie Kennedy, EveryLife Foundation for Rare Diseases
  • Pauline McNulty, Janssen
  • Donna Messner, Formerly at Center for Medical Technology Policy
  • John Schall, Caregiver Action Network
  • Jason Spangler, Amgen
  • Neo Tapela, ICHOM – International Consortium for Health Outcomes Measurement 
  • Patrick Wildman, Lupus Foundation of America
  • Paula Williamson, COMET
  • Leonard Valentino, National Hemophilia Foundation
  • Susan Vallow, Novartis Pharmaceuticals Corporation
  • Yvette Venable, Institute for Clinical and Economic Review
  • Robyn Bent, US Food and Drug Administration
  • Kristin L. Carman, Patient Centered Outcomes Research Institute
  • Andrew Cleeland, Fogarty Institute of Innovation
  • Kathryn Davidson, Center for Medicare and Medicaid Innovation
  • Karen Jackler, Center for Biologics Evaluation and Research
  • Douglas Kelly, US Food and Drug Administration
  • Michelle Tarver, US Food and Drug Administration

Work Group 1:

  • Denise D’Alessio, Novartis Pharmaceuticals Corporation
  • J. Samantha Dougherty, PhRMA
  • Anna Hyde, Arthritis Foundation
  • Donna Messner, Formerly at Center for Medical Technology Policy
  • Melanie Ridley, Innovation and Value Initiative
  • Jenna Riemenschneider, Asthma and Allergy Foundation of America

Work Group 2:

  • Laurie Burke, LORA Group, LLC
  • Samantha Dougherty, PhRMA
  • Orna Ehrlich, Crohn’s & Colitis Foundation
  • Michele Guadalupe, National Eczema Association
  • Hannah Jaffe, Asthma and Allergy Foundation of America
  • Rosalind Fabumni & Barry Liden, Edwards Lifesciences

Work Group 3:

  • Nicole Boschi, National Multiple Sclerosis Society
  • Nicholas Brooke, Patient Focused Medicines Development
  • Yvette Venable, Institute for Clinical and Economic Review
  • Paula Williamson, COMET
  • Heather Rozjabek, Janssen Global Services
  • Wendy Smith Begolka, National Eczema Association

The August 17, 2022 Multi-Stakeholder Dialogue on Achieving Patient-Centered Core Impact Sets (PC-CIS) is funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington Engagement Award (EASCS-24850).

Sponsors

Phase One Sponsors:

PHASE TWO SPONSORS: