By: Elisabeth Oehrlein, PhD, MS, Assistant Vice President, Research & Programs, and Silke Schoch, Manager, Research & Programs

The National Health Council is very excited to announce the launch of the Patient Experience Mapping Toolbox. The Toolbox is a set of publicly available resources to help researchers engage and document chronic disease patients’ experiences before getting a diagnosis, while getting a diagnosis, and living with a diagnosis. Development of the Toolbox was guided by a multidisciplinary advisory board. Methods included a literature review of conceptual models and related resources, cognitive interviews, and pilot interviews with a diverse group of patients with chronic diseases and disabilities. All patient-facing tools were reviewed externally by health literacy experts and refined through patient interviews.

• 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.
• 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.
• “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.

We encourage you to visit the Toolbox website to learn more. If you would like to partner with us to apply the Toolbox and receive updates about the Toolbox, including an upcoming training, please reach out to us at [email protected].

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 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.