About the Toolbox
The Patient Experience Mapping Toolbox is a set of publicly available resources to help researchers engage and document patients’ experiences before getting a diagnosis, while getting a diagnosis, and living with a diagnosis.
The Patient Experience Mapping Toolbox was developed to help researchers capture patient experience data more holistically and in a standardized manner across chronic diseases. The Toolbox includes project planning and data collection tools. All patient-facing tools were reviewed externally by health literacy experts and refined through patient interviews. To encourage uptake, the Toolbox is made available free for public use.
Watch the introductory video below to learn more.
Visit the NHC’s Patient Compensation Toolbox for guidance on paying interview participants for their time.
We would like to acknowledge and thank the interviewees who contributed their time to developing and refining the visual and interview guides, as well as our advisors and supporters:
Work group members: Stacie Bell, PhD, National Psoriasis Foundation, Morgan Daven, MA, Alzheimer’s Association, Rachel Dungan, MS and Allison Isaacson, MPH, AcademyHealth, Linda Deal, Pfizer, Newell McElwee, PharmD, MSPH, Boehringer-Ingelheim, Lori Frank, PhD, RAND Corporation, Beth Gore, PhD, Association for Vascular Access, Elise Hoover and Nicole Harr, PKD Foundation, Mark McEwen, Health Advocate, Christeen Moburg, Sangamo Therapeutics, Inc., Chris Pashos, PhD, Independent Consultant, Roz Schneider, MD, MSc, FACP, FCCP, RozMD Patient Affairs Consulting, LLC, Jonathan Stokes, MBA, Abbvie, Sadie Whittaker, PhD and Allison Ramiller, Solve ME/CFS, Jamie Zagorski, MSN, NP, Gilead Sciences, Inc.
Development of the Toolbox was supported by Allergan, AbbVie, Biogen, Boehringer-Ingelheim, Gilead Sciences, Inc., Pfizer, and Sangamo Therapeutics.
Referencing the Toolbox:
Oehrlein EM, Schoch S, Majercak K, Gressler LE, Costantino R, Perfetto EM on behalf of Patient Experience Mapping Working Group. Patient Experience Mapping Toolbox. National Health Council; 2021. Available from: https://nationalhealthcouncil.org/resources/patient-experience-map
The purpose of the Patient Experience Mapping Toolbox (Toolbox) is to help researchers engage and document patients’ experiences before getting a diagnosis, while getting a diagnosis, and living with a diagnosis. The Toolbox was created by the National Health Council with funding from Allergan, AbbVie, Biogen, Boehringer Ingelheim, Gilead Sciences, Inc., Pfizer, and Sangamo Therapeutics. The Toolbox is supplied for your convenience only and use of the Toolbox in research is not a substitute for working with a knowledgeable researcher and receiving study approval and oversight from an Institutional Review Board.
The National Health Council provides this Toolbox “AS IS, WHERE IS” AND WITHOUT WARRANTY OF ANY KIND, EITHER EXPRESS, IMPLIED, OR STATUTORY, INCLUDING BUT NOT LIMITED TO IMPLIED WARRANTIES OF MERCHANTABILITY, FITNESS FOR PURPOSE, OR NON-INFRINGEMENT. The National Health Council makes no warranty that the Toolbox will meet your requirements or be error-free. By using this Toolbox, you agree that you rely on this Toolbox at your own risk and the National Health Council, Inc., its partners, employees, agents, affiliates, and any party involved in creating, producing, or delivering the Toolbox, shall have no liability to you for any claim arising from your use of this Toolbox.