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Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research
oleh: Vivian Christensen, Kellee Parker, Erika Cottrell
| Format: | Article |
|---|---|
| Diterbitkan: | Cambridge University Press 2021-01-01 |
Deskripsi
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.