{"doi":"10.1093/jamia/ocaf182","title":"Observer: creation of a novel multimodal dataset for outpatient care research","abstract":"OBJECTIVE: To support ambulatory care innovation, we created Observer, a multimodal dataset comprising videotaped outpatient visits, electronic health record (EHR) data, and structured surveys. This paper describes the data collection procedures and summarizes the clinical and contextual features of the dataset. MATERIALS AND METHODS: A multistakeholder steering group shaped recruitment strategies, survey design, and privacy-preserving design. Consented patients and primary care providers (PCPs) were recorded using room-view and egocentric cameras. EHR data, metadata, and audit logs were also captured. A custom de-identification pipeline, combining transcript redaction, voice masking, and facial blurring, ensured video and EHR HIPAA compliance. RESULTS: We report on the first 100 visits in this continually growing dataset. Thirteen PCPs from 4 clinics participated. Recording the first 100 visits required approaching 210 patients, from which 129 consented (61%), with 29 patients missing their scheduled encounter after consenting. Visit lengths ranged from 5 to 100 minutes, covering preventive care to chronic disease management. Survey responses revealed high satisfaction: 4.24/5 (patients) and 3.94/5 (PCPs). Visit experience was unaffected by the presence of video recording technology. DISCUSSION: We demonstrate the feasibility of capturing rich, real-world primary care interactions using scalable, privacy-sensitive methods. Room layout and camera placement were key influences on recorded communication and are now added to the dataset. The Observer dataset enables future clinical AI research/development, communication studies, and informatics education among public and private user groups. CONCLUSION: Observer is a new, shareable, real-world clinic encounter research and teaching resource with a representative sample of adult primary care data.","journal":"Journal of the American Medical Informatics Association","year":2025,"id":579247,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":0.0,"corpus_rank":10062,"citation_count":0,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":true,"is_dataset_confidence":0.8828,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2025-01-01","fair_score":50.0,"fair_percentile":62.702537450321,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":1457408,"name":"Basam Alasaly","orcid":"0000-0002-0805-595X","position":1,"is_corresponding":false},{"id":1358543,"name":"Kuk Jin Jang","orcid":"0000-0002-3134-3220","position":2,"is_corresponding":false},{"id":1120466,"name":"Eric Eaton","orcid":null,"position":3,"is_corresponding":false},{"id":1457409,"name":"Sriharsha Mopidevi","orcid":"0009-0002-6065-0251","position":4,"is_corresponding":false},{"id":633927,"name":"Ross Koppel","orcid":"0000-0002-8235-9900","position":5,"is_corresponding":false},{"id":501474,"name":"Kevin B. Johnson","orcid":"0000-0003-1016-9363","position":0,"is_corresponding":true}],"reference_count":39,"raw_metadata":null,"created_at":"2026-07-19T02:58:30.282164Z","pmid":"41144304","pmcid":"PMC12844583","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":50.0,"fair_a":50.0,"fair_i":80.0,"fair_r":58.3333,"fair_zscore":0.6155,"fair_rationale":{"fair_score":50.0,"has_llm":true,"taxonomy_version":"fair_taxonomy_v5","dimensions":{"F":{"name":"Findable","score":50.0,"criteria":[{"key":"f_dataset_pid","label":"Persistent identifier for the data","kind":"llm","weight":2.0,"fraction":0.5,"verdict":"partial","evidence":"https://observer.med.upenn.edu/","grounded":true,"rationale":"The dataset is identified by a web URL (not a DOI, Handle, ARK, or repository accession), which is class 2.","anchors":["RDA-F1-01D — FAIR Data Maturity Model: 'Data is identified by a persistent identifier' (priorit","RDA-F1-02D — FAIR Data Maturity Model: 'Data is identified by a globally unique identifier'","FsF-F1-02D — F-UJI/FAIRsFAIR: 'Data is assigned a persistent identifier'"],"scored":true,"signal":null},{"key":"f_repository_named","label":"Named repository","kind":"llm","weight":2.0,"fraction":0.5,"verdict":"partial","evidence":"All data packages are stored in a secure institutional archive, with download access granted through a verification process modeled after the MIMIC framework.","grounded":true,"rationale":"The named holder is a 'secure institutional archive' (not a named repository listed in re3data/FAIRsharing), so it is a non-repository host.","anchors":["RDA-F4-01M — FAIR Data Maturity Model: metadata is offered so it can be harvested and indexed (","NIH DMS Policy Element 4 (NOT-OD-21-014) — name the repository where data will be archived","NSTC Desirable Characteristics of Data Repositories (2022) — 'Long-Term Sustainability', 'Reten"],"scored":true,"signal":null},{"key":"f_data_availability_statement","label":"Data-availability statement","kind":"llm","weight":2.0,"fraction":0.5,"verdict":"partial","evidence":"The Observer dataset is available at https://observer.med.upenn.edu/ . 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NIH DMS Element 4 asks for both; most papers give neither.","anchors":["yes","partial","no"],"verdict":"no","current":0.0,"evidence":"All data packages are stored in a secure institutional archive, with download access granted through a verification process modeled after the MIMIC framework.","why":"The text states the data are stored in an institutional archive but does not specify how long they will remain available or make a persistence commitment.","gain":0.0,"priority":"useful","scored":false}],"suggestions":["Attach a standard, machine-readable open licence to the deposit — CC0 or CC BY, which is what Horizon Europe and most funders expect — and print the licence identifier in the paper. 'Free to use' is not a licence: it grants nothing a reuser's institution can rely on.","Mint or cite a persistent identifier for the dataset — a repository DOI or an accession from a registered repository — and print it in the paper. A bare URL is not persistent: it is the single most common cause of a dead data link five years after publication. For clinical / human-subjects data, deposit in dbGaP or the European Genome-phenome Archive (EGA).","Deposit the data in a repository registered in re3data/FAIRsharing (a domain repository such as GEO, SRA, dbGaP, PRIDE, or a generalist such as Zenodo, Dryad, Dataverse) and name it explicitly in the paper. A lab website is not an archive: it has no retention commitment and no accession. For clinical / human-subjects data, deposit in dbGaP or the European Genome-phenome Archive (EGA).","Remove the precondition or justify it. Release the data at publication with no embargo, no registration wall, and no approval step — NIH's zero-embargo public- access rule (NOT-OD-25-101) has already made 'available at publication' the federal baseline for the article; the data should not lag behind it. For clinical / human-subjects data, deposit in dbGaP or the European Genome-phenome Archive (EGA).","Cite the dataset in the reference list like a publication — creator, year, title, repository, DOI/accession — and cite it in-text where it is used. Only a reference- list entry is machine-readable to Crossref/DataCite, and only a citation lets the data earn credit. Cite the clinical / human-subjects repository accession (e.g. from dbGaP or the European Genome-phenome Archive (EGA)) in the reference list."],"model":"deepseek/deepseek-v4-flash","agent_version":"fair_agent_v8","fulltext_source":"epmc_xml"},"fair_model":"deepseek/deepseek-v4-flash","fair_agent_version":"fair_agent_v8","fair_fulltext_source":"epmc_xml","fair_has_llm":true,"fair_computed_at":"2026-07-20T13:59:19.654605Z","clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}