Patient Experience Mapping Toolbox

Understanding the patient’s journey with disease is critical as it enables understanding the context of the patient experience, the natural history of the disease from the patient perspective, and what is important to patients. However, there are no standardized tools or approaches, and there are few opportunities for shared learnings. Thus, patient-friendly tools are needed for capturing “real-world” patient experiences and the patient journey, leveraging sound existing materials and content.

The National Health Council (NHC) is focused on ensuring the patient’s journey is collected in standardized ways to inform patient-centric efforts in research, product development, and care delivery. We want to leverage the tools available and communicate shared learnings. To that end, we will develop a Patient Experience Mapping Toolbox.

By the end of 2020, the NHC will develop the Patient Experience Mapping Toolbox. This toolbox will contain:

  • a patient-driven, patient-friendly Patient Exeprience conceptual model along with;
  • Related data-gathering tools;
  • a user guide; and
  • Example applications of its’ use.
  • Stacie Bell, PhD, National Psoriasis Foundation
  • Morgan DavenMA, Alzheimer’s Association
  • Rachel Dungan, MS, AcademyHealth
  • Linda Deal, MS, Pfizer
  • Lori Frank, PhD, RAND Corporation
  • Beth Gore, PhD, Association for Vascular Access
  • Julie Fiol, RN, National Multiple Sclerosis Society
  • Elise Hoover/Nicole Harr, PKD Foundation
  • Newell McElwee, PharmD, MSPH, Boehringer-Ingelheim
  • Mark McEwenHealth Advocate
  • Christeen Moburg, Sangamo Therapeutics, Inc.
  • Chris Pashos, PhD, Independent Consultant
  • Roz Schneider, MD, MSc, FACP, FCCP, Theravance Biopharma
  • Jonathan Stokes, MBA, Allergan
  • Sadie Whittaker, PhD/Allison Ramiller, Solve ME/CFS
  • Jamie Zagorski, MSN, NPGilead Sciences, Inc.
  • Allergan
  • AbbVie
  • Biogen
  • Boehringer Ingelheim
  • Pfizer
  • Sangamo Therapeutics

Learn More

Read our blog, "Development of the National Health Council Patient Experience Mapping Toolbox."