# PhendoPHL:A Data-Science Enabled Personal Health Library to Manage Endometriosis

> **NIH NIH R01** · COLUMBIA UNIVERSITY HEALTH SCIENCES · 2020 · $352,350

## Abstract

PROJECT SUMMARY
Endometriosis is a chronic condition which is estimated to affect 10% of women in reproductive age. It has a
very high burden on quality of life and productivity, and the self-management needs of women living with
the disease are multiple. This project aims to design, develop, and evaluate a data-science enabled personal
health library called PhendoPHL to support the self-management needs of women living with
endometriosis. Grounded in self-determination theory, and informed by user-centered design methods
PhendoPHL will enable exploration of health patterns through interactive visualizations of integrated
clinical and self-tracked data, identify temporal personalized patterns and comparison to population norms
through novel data-science methods, and provide actionable visualizations of data for shared decision
making during patient-provider encounters. PhendoPHL builds on our existing work in novel informatics
methods for endometriosis, and the extensive experience of our research team in designing and evaluating
novel informatics interventions. The proposed work also fills a research gap in personal health informatics:
the development and validation of novel computational methods to identify personalized and population-
based patterns in clinical and self-monitoring data; both types of data which are critical to successful self-
management and challenging from a computational standpoint because they are temporal, heterogeneous,
and sparse. Using a mixed-methods evaluation study (standardized surveys, logfile analysis, Critical
Incident Technique interviews, focus groups), we will study PhendoPHL’s usability, assess the factors
critical to user engagement and perceived impact on self-determination and shared decision making, and
the generalizability to other reproductive chronic conditions in women’s health.

## Key facts

- **NIH application ID:** 9868327
- **Project number:** 5R01LM013043-02
- **Recipient organization:** COLUMBIA UNIVERSITY HEALTH SCIENCES
- **Principal Investigator:** NOEMIE ELHADAD
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $352,350
- **Award type:** 5
- **Project period:** 2019-02-07 → 2023-01-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9868327

## Citation

> US National Institutes of Health, RePORTER application 9868327, PhendoPHL:A Data-Science Enabled Personal Health Library to Manage Endometriosis (5R01LM013043-02). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/9868327. Licensed CC0.

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