Oehrlein, Elisabeth M.
Schoch, Silke
Majercak, Kelsie
Gressler, Laura Elisabeth
Costantino, Ryan C.
Love, T. Rosie
Perfetto, Eleanor M.
,
Bell, Stacie
Daven, Morgan
Deal, Linda S.
Dungan, Rachel
Fiol, Julie
Frank, Lori
Gore, Beth
Harr, Nicole
McElwee, Newell
Moburg, Christeen
Pashos, Chris L.
Schneider, Roslyn F.
Stokes, Jonathan
Zagorski, Jamie
Funding for this research was provided by:
National Health Council
Allergan
AbbVie
Biogen
Boehringer Ingelheim
Gilead Sciences
Pfizer
Sangamo Therapeutics
Article History
Accepted: 25 October 2023
First Online: 3 January 2024
Declarations
:
: EMO conceived the study. EMO, SS, KM, EP, and Workgroup Members designed the study. EMO, SS, KM, LEG, RCC, and TRL collected and analyzed data, all authors and Workgroup Members interpreted the data. EMO, LEG, and RCC drafted the manuscript. SS, KM, TRL, EP, and Workgroup Members provided substantive edits to the manuscript. All authors read and approved the final version of the manuscript.
: Development of the Toolbox was supported by Allergan, AbbVie, Biogen, Boehringer-Ingelheim, Gilead Sciences, Inc., Pfizer, and Sangamo Therapeutics.
: This work was supported by the National Health Council. EO is a former employee of the National Health Council (NHC) and employed by Applied Patient Experience LLC, which has contracts with a variety of nonprofit organizations, pharmaceutical companies, and academic institutions, including the NHC. SS is an employee of the National Health Council, a membership organization that receives dues and sponsorships from a variety of funders, both members and sponsors. Please see the NHC website for lists of members and sponsors (). EP is a former employee of the NHC and also has a faculty appointment at the University of Maryland Baltimore School of Pharmacy and has received funding from the NHC, Merck, PhRMA, and the Innovation in Value Initiative. KM has no conflicts of interest to disclose. LEG has no conflicts of interest to disclose. RC is an employee of the Department of Defense. RC also has a faculty appointment the University of Maryland Baltimore Graduate School and Uniformed Services University. TRL completed an internship at the National Health Council and received consulting fees for conducting the cognitive interviews. TRL has received remuneration for completion of Voice of the Patient activities with Nephcure as a patient living with IgA Nephropathy. . SB was an employee of the National Psoriasis Foundation, a nonprofit organization representing individuals living with psoriatic disease, at the time the work was completed. MD has nothing to disclose. LSD is an employee of the pharmaceutical company Pfizer Inc. which provides funding to the NHC. RD has nothing to disclose. JF has nothing to disclose. LF was an employee of the RAND Corporation at the time the work was completed and serves on the Board of the Personalized Medicine Foundation, the International Society for Quality of Life Research, and the Medical, Scientific, and Medical Screening Advisory Board of the Alzheimer’s Foundation of America. BG is a former employee of the Association for Vascular Access, the current President of the Board of Trustees for The Oley Foundation without compensation, and she represents the patient voice in various healthcare projects without compensation. She is periodically hired by various groups to give keynote speeches on the subject of patient harm. NH and EH, employed by the PKD Foundation, have no disclosures. NM was an employee of Boehringer–Ingelheim at the time the work was completed. Boehringer-Ingelheim provides funding for NHC. NM owns stock in Merck and Pfizer (former employers). CM is employed at Sangamo Therapeutics headquartered in Brisbane, CA. CLP has received research funding from Genesis Research. RFS has received consulting fees from GSK, Merck, and BreathResearch, salary and stocks from Pfizer, Theravance Biopharma US, and currently at BioMarin Pharmaceuticals Inc. JS is an employee of AbbVie Inc. which provides funding to the NHC and he owns AbbVie stock. JZ is an employee of and owns common stock in Gilead Sciences.
: Interview transcripts analyzed in this study contain potentially identifiable information. Individual transcripts will not be shared. The corresponding author can be contacted with any specific questions.