A Dataset and Resources for Identifying Patient Health Literacy Information from Clinical Notes
Authors: Madeline Bittner, Dina Demner-Fushman, Yasmeen Shabazz, Davis Bartels, Dukyong Yoon, Brad Quitadamo, Rajiv Menghrajani, Leo Celi, Sarvesh Soni
Organizations: National Library of Medicine, Bethesda, MD, USA · Massachusetts Institute of Technology (MIT), Cambridge, MA, USA · Yonsei University College of Medicine, Seoul, Republic of Korea · Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA · NYC Health + Hospitals - Lincoln, Bronx, New York, USA
Health literacy is a critical determinant of patient outcomes, yet current screening tools are not always feasible and differ considerably in the number of items, question format, and dimensions of health literacy they capture, making documentation in structured electronic health records difficult to achieve. Automated detection from unstructured clinical notes offers a promising alternative, as these notes often contain richer, more contextual health literacy information, but progress has been limited by the lack of annotated resources. We introduce HEALIX, the first publicly available annotated health literacy dataset derived from real clinical notes, curated through a combination of social worker note sampling, keyword-based filtering, and LLM-based active learning. HEALIX contains 589 notes across 9 note types, annotated with three health literacy labels: low, normal, and high. To demonstrate its utility, we benchmarked zero-shot and few-shot prompting strategies across four open source large language models (LLMs).
Figures & tables
Figure 1: Workflow for dataset development. First, clinical notes were collected from the MIMIC-III database via three sampling strategies: random sampling of social worker notes, keyword-based filtering, and LLM-based active learning. Next, the sampled notes were independently annotated and reconciled to produce the HEALIX gold standard dataset. Finally, zero-shot and few-shot prompting strategies were applied to establish baseline model performance.
adherence
insight (lack of/poor/little/minimal)
refusal
awareness
knowledge / limited knowledge
understands / comprehends
compliance / (non-)compliant
medical advice
understanding (good/poor/limited)
difficulty understanding
misunderstanding (of/the)
unaware (of diagnosis/history)
health literacy / literacy / literate
non(-)adherence / non(-)adherent
well(-)aware
inadequacy
patient choice / patient preference
Table 1: Keywords used in health literacy dataset curation.
Table 2: LLaMA 3-8B Instruct prompt template for health literacy note level classification in the active learning workflow.
Level
Definition
Examples
Low
Patient is unable to understand, interpret, and use health information to make decisions
The patient does not understand the need to follow up with physician.
Normal
An individual is able to obtain, understand, and use health/medical information to make informed health related decisions
The patient is aware of the treatment plan.
High
Patient demonstrates an above average understanding of medical related information and is able to use that information to make informed decisions
The patient demonstrated their medication regimen.
Table 3: Definitions of health literacy levels and examples.
Table 4: Prompt template used for zero-shot and few-shot clinical note strict classification during model evaluation.
Model
Setting
Strict
Lenient
P
R
F1
P
R
F1
SVM
–
0.64
0.39
0.41
0.56
0.49
0.50
LLaMA 3-8B-Instruct
Zero-Shot
0.46
0.47
0.46
0.55
0.54
0.54
Few-Shot
0.45
0.48
0.45
0.55
0.55
0.55
LLaMA 3.3-70B-Instruct
Zero-Shot
0.52
0.51
0.51
0.64
0.62
0.63
Few-Shot
0.47
0.49
0.46
0.61
0.62
0.60
Table 5: Model Performance Evaluation at the strict, 4 classes level, and lenient, 3 classes level.
Figure 2: Confusion matrices for SVM and LLaMA 70B (zero-/few-shot). SVM matrix uses a different color bar than the LLaMA matrices.
Category
Value
Low (N=75)
Normal (N=186)
High (N=45)
Not Related (N=283)
Total (N=589)
Sex
Male
49 (65.3)
112 (60.2)
29 (64.4)
143 (50.5)
333 (56.5)
Female
26 (34.7)
74 (39.8)
16 (35.6)
140 (49.5)
256 (43.5)
Ethnicity
White
47 (62.7)
124 (66.7)
37 (82.2)
196 (69.3)
404 (68.6)
Black/African American
16 (21.3)
17 (9.1)
1 (2.2)
28 (9.9)
62 (10.5)
Hispanic/Latino
3 (4.0)
16 (8.6)
3 (6.7)
17 (6.0)
39 (6.6)
Asian
1 (1.3)
8 (4.3)
3 (6.7)
11 (3.9)
23 (3.9)
Table 6: Patient demographics, encounter characteristics, and clinical note categories in the dataset, stratified by health literacy label (Low, Normal, High, Not Related) and overall (Total). Values are shown as count (%) within column, with percentages rounded to one decimal place.
Figure 3: Annotated clinical note excerpts illustrating examples of varying model classification difficulty. Highlighted text represents evidence of patient health literacy within the note. Any misspellings or abbreviations are reported as they appear in the original note.
Clinical information for amyotrophic lateral sclerosis (ALS) care documented in unstructured clinical notes limits downstream analysis without extraction into structured formats. Open-source small language models with few-shot prompting for detecting the presence of ALS-relevant clinical terms in patient documentation were evaluated without task-specific training data. The detection task targeted 17 categories spanning functional scores, respiratory measures, medications, and related clinical and non-clinical attributes. Clinical note content was normalized from JSON-encoded discharge summaries and processed with a prompt template having structured JSON outputs. We compared 26 open-source models using aggregate, label-level, and manual-validation multilabel classification metrics. Manual validation showed that a regex rule baseline had higher overall micro-F1 and lower Hamming loss than any single SLM or TF-IDF baseline, while Qwen3-4B-Instruct-2507 was the highest-performing SLM by micro-F1. Model rankings varied by metric and label category, with the TF-IDF baseline showing high recall but low precision, some SLMs showing higher precision but lower recall, and Hammer2.1-7b showing strong performance for ALSFRS-R subscore detection. These findings support targeted hybrid extraction workflows rather than replacement of existing rule-based methods.
Noah Marchal, William E. Janes, Mihail Popescu +1
University of Missouri, Columbia, Missouri, USA · Department of Occupational Therapy; University of Missouri, Columbia, Missouri, USA
Large Language Model (LLM)-augmented Community Notes offer a scalable path for timely, evidence-grounded correction of health misinformation on social platforms. However, they still reset at every post, leaving useful correction experience from prior cases unused. We introduce EvoNote, an agentic framework that enables health Community Notes generation to self-evolve through an evolving experience memory of prior misinformation correction episodes. Its core is fine-grained credit assignment: EvoNote grounds trajectory-level feedback in health-specific note qualities and distills it into action-level memory for claim analysis, evidence acquisition, and note writing. We evaluate EvoNote on MM-HealthCN, a 1.2K-instance multimodal benchmark of user-flagged health posts with human-written Community Notes and crowd-derived helpfulness labels. Under a human-validated hierarchical utility judge, EvoNote-generated notes are preferred over corresponding human-written notes in 89.6% of cases; on a separate set of Needs More Ratings posts without a crowd helpfulness verdict, EvoNote produces helpful notes for 82.0% of cases. It also reduces time to an available candidate correction from multi-hour post-to-note delays to under 2 minutes on average. Analyses link these quality gains to stronger evidence use and reusable correction strategies, positioning self-evolving note generation as a promising paradigm for scalable health misinformation governance.
Zihang Fu, Fanxiao Li, Jianyang Gu +5
National University of Singapore · Yunnan University · The Ohio State University +1
De-identification of clinical text is a prerequisite for the secondary use of electronic health records. Existing public benchmarks such as the i2b2 2006 and 2014 corpora are over a decade old and lack the semantic and demographic diversity of modern clinical narratives. Large Language Models (LLMs) reach state-of-the-art zero-shot extraction, but their use at enterprise scale is limited by computational cost and by hospital data governance that restricts sending Protected Health Information (PHI) to cloud APIs. We introduce SHIELD (Synthetic Human-annotated Identifier-replaced Entries for Learning and De-identification), a diverse clinical note dataset of 1,381 notes with 10,229 gold-standard PHI spans across 9 categories, built with set-cover diversity sampling across demographic and document-type strata and human-in-the-loop adjudication. We evaluate four LLMs (two proprietary, two open-weight) to establish a performance ceiling on SHIELD, then show that a teacher-student distillation framework transfers these capabilities into locally deployable Small Language Models. Our best distilled model reaches micro-averaged span-level precision of 0.89 and recall of 0.88 while running on standard workstation hardware. It trails its cloud teacher on per-category recall (0.90 vs. 0.81 macro-averaged) but remains competitive given its lower cost and on-premise deployability. Cross-dataset evaluation shows that diversity-trained models generalize well on universal structured PHI categories, while institution-specific entities remain hard to transfer in both directions, which suggests pairing broad-coverage models with specialized models for high-volume, semi-structured note types. We publicly release the SHIELD dataset and the distilled DeBERTa v3 model to provide an accurate, cost-effective de-identification pipeline deployable entirely behind institutional firewalls.
Jose D. Posada, David Love, Somalee Datta +1
Technology & Digital Solutions Stanford Medicine · Stanford Medicine