PATIENT EXPERIENCE DOSSIERS IN PRACTICE: A DEMONSTRATION PROJECT IN METASTATIC NON-SMALL CELL LUNG CANCER
Author(s)
Lillian Witting1, Omar A. Escontrias, MPH, DrPH2, Upal Basu Roy, MPH, PhD3, Terri Conneran, BSc4, Shanada Monestime, PharmD, BCOP5, Elisabeth Oehrlein, MS, PhD6, Joe Vandigo, MBA, PhD7, Cosmina Hogea, MS, PhD8;
1National Health Council, Manager, Research & Programs, Washington, DC, USA, 2National Health Council, Washington, DC, USA, 3LUNGevity Foundation, Bethesda, MD, USA, 4KRAS Kickers, Charlotte, NC, USA, 5GO2 for Lung Cancer, Washington, DC, USA, 6Applied Patient Experience, LLC, Washington, DC, USA, 7Applied Patient Experience, Greensburg, PA, USA, 8Gilead Science, Foster City, CA, USA
1National Health Council, Manager, Research & Programs, Washington, DC, USA, 2National Health Council, Washington, DC, USA, 3LUNGevity Foundation, Bethesda, MD, USA, 4KRAS Kickers, Charlotte, NC, USA, 5GO2 for Lung Cancer, Washington, DC, USA, 6Applied Patient Experience, LLC, Washington, DC, USA, 7Applied Patient Experience, Greensburg, PA, USA, 8Gilead Science, Foster City, CA, USA
OBJECTIVES: Findings from patient-centered research are essential to health care decision-making; however, it is often spread across various platforms and levels of publishing. A Patient Experience (PE) Dossier consolidates wide-spread disease-specific information from a patient-centered lens to supplement current value dossier models to more fully reflect the holistic patient perspective. This mechanism would effectively help integrate and communicate PE data to contextualize patients’ experiences in how diagnostics, treatment, and management of a condition affect their lives and identify gaps for future research.
METHODS: From 2022-2024, patients, advocates, researchers, and other stakeholders initiated an effort to streamline how patient-centered evidence is collated and communicated. An environmental scan, stakeholder interviews, and patient community workshops informed the creation of a multidisciplinary advisory board, which advanced the PE Dossier concept and the development of a general template. In 2025, a multistakeholder metastatic non-small cell lung cancer (mNSCLC) steering committee was created to co-develop a demonstration dossier informed by current literature specific to the mNSCLC patient experience.
RESULTS: Four themes of importance were identified in the mNSCLC dossier: 1) Screening criteria and diagnostic procedures need to be prioritized in primary practitioner education, 2) Once diagnosed, lung cancer patients place greater value in financial, psychological, and caregiver support that aid independence, 3) Knowledge gaps in targeted therapies and unequitable access to biomarker testing inhibit lung cancer patient choice of personalized treatment, and 4) Misunderstandings of care options and gaps in patient preferred outcomes impact patient perceived value of care.
CONCLUSIONS: Themes identified by mNSCLC literature highlight critical gaps between patient needs and current practices. The dossier will provide practitioners, payers, researchers, health economists, and other stakeholders in the health care ecosystem with a systematic understanding of how mNSCLC impacts patients for further integration with clinical practice, regulation, treatment guidelines, health technology assessments, and other decision-making processes.
METHODS: From 2022-2024, patients, advocates, researchers, and other stakeholders initiated an effort to streamline how patient-centered evidence is collated and communicated. An environmental scan, stakeholder interviews, and patient community workshops informed the creation of a multidisciplinary advisory board, which advanced the PE Dossier concept and the development of a general template. In 2025, a multistakeholder metastatic non-small cell lung cancer (mNSCLC) steering committee was created to co-develop a demonstration dossier informed by current literature specific to the mNSCLC patient experience.
RESULTS: Four themes of importance were identified in the mNSCLC dossier: 1) Screening criteria and diagnostic procedures need to be prioritized in primary practitioner education, 2) Once diagnosed, lung cancer patients place greater value in financial, psychological, and caregiver support that aid independence, 3) Knowledge gaps in targeted therapies and unequitable access to biomarker testing inhibit lung cancer patient choice of personalized treatment, and 4) Misunderstandings of care options and gaps in patient preferred outcomes impact patient perceived value of care.
CONCLUSIONS: Themes identified by mNSCLC literature highlight critical gaps between patient needs and current practices. The dossier will provide practitioners, payers, researchers, health economists, and other stakeholders in the health care ecosystem with a systematic understanding of how mNSCLC impacts patients for further integration with clinical practice, regulation, treatment guidelines, health technology assessments, and other decision-making processes.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR138
Topic
Patient-Centered Research
Topic Subcategory
Patient Behavior and Incentives, Patient Engagement, Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Oncology