{"doi":"10.1017/cts.2021.822","title":"Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research","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.","journal":"Journal of Clinical and Translational Science","year":2021,"id":206916,"datarank":0.3694419616796517,"base_score":1.791759469228055,"endowment":1.791759469228055,"self_citation_contribution":0.26876392038420827,"citation_network_contribution":0.10067804129544342,"self_endowment_contribution":0.26876392038420827,"citer_contribution":0.10067804129544342,"corpus_percentile":51.4813955287383,"corpus_rank":6273,"citation_count":5,"citer_count":3,"citers_with_citation_signal":2,"citers_with_endowment":2,"datacite_reuse_total":0,"is_dataset":true,"is_dataset_confidence":0.7165,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2021-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":734933,"name":"Kellee Parker","orcid":"0000-0002-3774-5992","position":1,"is_corresponding":false},{"id":696747,"name":"Erika Cottrell","orcid":"0000-0003-0481-4485","position":2,"is_corresponding":false},{"id":791906,"name":"Vivian Christensen","orcid":"0000-0002-1303-5371","position":0,"is_corresponding":true}],"reference_count":21,"raw_metadata":null,"created_at":"2026-07-18T23:51:45.688025Z","pmid":"34527294","pmcid":"PMC8427548","fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}