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. 2024 May;17(3):263-274.
doi: 10.1007/s40271-023-00658-3. Epub 2024 Jan 3.

Development and Testing of a Chronic-Disease Patient Experience Mapping Toolbox

Elisabeth M Oehrlein  1   2 , Silke Schoch  3 , Kelsie Majercak  3 , Laura Elisabeth Gressler  4 , Ryan C Costantino  3   5 , T Rosie Love  5   6 , Eleanor M Perfetto  3   5 ; National Health Council’s Patient Experience Mapping Workgroup
Collaborators, Affiliations

Development and Testing of a Chronic-Disease Patient Experience Mapping Toolbox

Elisabeth M Oehrlein et al. Patient. 2024 May.

Abstract

Background: Stakeholders increasingly expect research and care delivery to be guided by and to optimize patient experiences. However, standardized tools to engage patients to gather high-quality data about their experiences, priorities, and desired outcomes are not publicly available. The objective of this study was to develop and test a Toolbox with a disease-agnostic interview guide template and accompanying resources to assist researchers in engaging patients living with chronic disease in a dialogue about their experiences.

Methods: Guided by a multidisciplinary workgroup, a targeted literature review (PubMed) was conducted, followed by group discussions to identify/thematically organize patient experience concepts, development of a conceptual model, and drafting of an interview guide template and patient-facing visual. Materials were tested/refined via cognitive (n = 5) and pilot (n = 30) interviews conducted virtually with US patients diagnosed with chronic/potentially disabling conditions from December 2020 to April 2021. Patient-facing tools were reviewed by health literacy experts for applicability/accessibility. English-speaking adults who self-reported receiving a chronic condition diagnosis at least 6 months prior participated in a 60-90 min interview.

Results: Patient experience concepts were organized thematically under three domains: (1) life before a diagnosis, (2) experiences getting a diagnosis, and (3) experiences living with a diagnosis. A plain language consent sheet template, interview guide template, and patient experience conceptual model were developed and revised based on input from interviewees, interviewers, and the workgroup.

Conclusions: A disease-agnostic patient-engagement Toolbox was developed and tested to capture patient experience data. These materials can be customized based on study objectives and leveraged by various stakeholders to identify opportunities to enhance the patient centricity of healthcare delivery and research.

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Conflict of interest statement

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 (http://www.nationalhealthcouncil.org/). 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. https://nephcure.org/getinvolved/become-a-voice-of-patient-volunteer/. 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.

Figures

Fig. 1
Fig. 1
Patient experience mapping toolbox development methods
Fig. 2
Fig. 2
National Health Council's “Map My Experience” patient-facing conceptual model
Fig. 3
Fig. 3
Illustrative example of the “Map My Experience” conceptual model used in tandem with the interview guide
See this image and copyright information in PMC

References

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