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Background Patient-generated health data (PGHD) captured via smart devices or digital health technologies can reflect an individual health journey. PGHD enables tracking and monitoring of personal health conditions, symptoms, and medications out of the clinic, which is crucial for self-care and shared clinical decisions. In addition to self-reported measures and structured PGHD (eg, self-screening, sensor-based biometric data), free-text and unstructured PGHD (eg, patient care note, medical diary) can provide a broader view of a patient’s journey and health condition. Natural language processing (NLP) is used to process and analyze unstructured data to create meaningful summaries and insights, showing promise to improve the utilization of PGHD. Objective Our aim is to understand and demonstrate the feasibility of an NLP pipeline to extract medication and symptom information from real-world patient and caregiver data. Methods We report a secondary data analysis, using a data set collected from 24 parents of children with special health care needs (CSHCN) who were recruited via a nonrandom sampling approach. Participants used a voice-interactive app for 2 weeks, generating free-text patient notes (audio transcription or text entry). We built an NLP pipeline using a zero-shot approach (adaptive to low-resource settings). We used named entity recognition (NER) and medical ontologies (RXNorm and SNOMED CT [Systematized Nomenclature of Medicine Clinical Terms]) to identify medication and symptoms. Sentence-level dependency parse trees and part-of-speech tags were used to extract additional entity information using the syntactic properties of a note. We assessed the data; evaluated the pipeline with the patient notes; and reported the precision, recall, and F1 scores. Results In total, 87 patient notes are included (audio transcriptions n=78 and text entries n=9) from 24 parents who have at least one CSHCN. The participants were between the ages of 26 and 59 years. The majority were White (n=22, 92%), had more than one child (n=16, 67%), lived in Ohio (n=22, 92%), had mid- or upper-mid household income (n=15, 62.5%), and had higher level education (n=24, 58%). Out of 87 notes, 30 were drug and medication related, and 46 were symptom related. We captured medication instances (medication, unit, quantity, and date) and symptoms satisfactorily (precision >0.65, recall >0.77, F1>0.72). These results indicate the potential when using NER and dependency parsing through an NLP pipeline on information extraction from unstructured PGHD. Conclusions The proposed NLP pipeline was found to be feasible for use with real-world unstructured PGHD to accomplish medication and symptom extraction. Unstructured PGHD can be leveraged to inform clinical decision-making, remote monitoring, and self-care including medical adherence and chronic disease management. With customizable information extraction methods using NER and medical ontologies, NLP models can feasibly extract a broad range of clinical information from unstructured PGHD in low-resource settings (eg, a limited number of patient notes or training data). |
