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.

Project Planning

Project Coordinator Guide

A resource for researchers interested in applying the Toolbox for specific study.

Interviewer Training Guide

A resource to help the individuals who are conducting in-depth interviews become acquainted with the interview guide and the “Map My Experience” visual aid.

Visit the NHC’s Patient Compensation Toolbox for guidance on paying interview participants for their time.

Data Collection

Consent Sheet Template

A customizable template to provide interview participants with information about the purpose, possible benefits, and risks of participating in an interview.

Interview Guide Template

A collection of questions aimed at capturing patients’ experiences from pre-diagnosis, through diagnosis and treatment, up to the present day.

Access an editable word version here.

“Map My Experience” Visual

A patient-facing visual aid that can be used in conjunction with the interview guide to help participants describe their patient experiences.

Acknowledgements:

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 DavenMA, 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 GorePhD, 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, 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 

 Patient Experience Mapping Toolbox Terms of Use:

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.