Abstract
Understanding patient and caregiver experiences is a critical component of the conception, design, and implementation of clinical research studies. The "Database of Individual Patient Experiences" (DIPEx) is an innovative, evidence-based approach for eliciting rich information about health experiences. We conducted a formative evaluation with 14 pediatric oncology researchers to assess the value of using data from a DIPEx study on patient and caregiver experiences with childhood cancer to inform patient-centered research in pediatric oncology. Participants identified barriers to incorporating patient perspectives and experiences into their research and how the DIPEx approach could be leveraged to facilitate this practice.
Highlights
To align research efforts with the real-world needs of patients and caregivers, there are continued calls to actively engage patients and their caregivers and to incorporate their perspectives, values, and preferences into the conception, design, and implementation of clinical research studies [1,2,3,4]
We explore whether the Database of Individual Patients’ Experiences (DIPEx) – an innovative, evidence-based approach for eliciting rich narratives about health experiences – could be leveraged to facilitate the integration of patient/caregiver perspectives into clinical research
This is the first examination of interest in and feasibility of utilizing a repository of qualitative data on patient/caregiver experiences to inform clinical research in pediatric oncology
Summary
To align research efforts with the real-world needs of patients and caregivers, there are continued calls to actively engage patients and their caregivers and to incorporate their perspectives, values, and preferences into the conception, design, and implementation of clinical research studies [1,2,3,4]. Recent evidence has demonstrated the value of patient and caregiver engagement, and this practice has continued to increase [5], incorporating patient/caregiver perspectives into clinical research requires sufficient resources and support and is often underutilized [1, 3, 6,7,8]. We explore whether the Database of Individual Patients’ Experiences (DIPEx) – an innovative, evidence-based approach for eliciting rich narratives about health experiences – could be leveraged to facilitate the integration of patient/caregiver perspectives into clinical research. Qualitative data are archived in a repository and available for secondary analysis and use, upon request [10]
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