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

Award Number: R01LM013043
ORGANIZATION: NATIONAL LIBRARY OF MEDICINE
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 02/07/2019
PERIOD OF PERFORMANCE END DATE: 01/31/2025

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


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2025 ( Subtotal = $0 )
2025	2022	THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Medical Library Assistance	000	4	5/28/2025	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2024 ( Subtotal = $0 )
2024	2022	THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Medical Library Assistance	000	4	1/24/2024	NON-COMPETING CONTINUATION	$0
														Subtotal = $0

Issue Date FY: 2022 ( Subtotal = $352,350 )
2022	2022	TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK, THE	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Medical Library Assistance	000	4	1/13/2022	NON-COMPETING CONTINUATION	$352,350
														Subtotal = $352,350

Issue Date FY: 2021 ( Subtotal = $352,350 )
2021	2021	TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK, THE	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Medical Library Assistance	001	3	5/14/2021	NON-COMPETING CONTINUATION	$17,618
2021	2021	TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK, THE	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Medical Library Assistance	000	3	4/12/2021	NON-COMPETING CONTINUATION	$334,732
														Subtotal = $352,350

Issue Date FY: 2020 ( Subtotal = $352,350 )
2020	2020	TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Medical Library Assistance	001	2	5/14/2020	NON-COMPETING CONTINUATION	$35,235
2020	2020	TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Medical Library Assistance	000	2	1/15/2020	NON-COMPETING CONTINUATION	$317,115
														Subtotal = $352,350

Issue Date FY: 2019 ( Subtotal = $352,350 )
2019	2019	TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK	630 W 168TH ST FL 4	NEW YORK	NY	10032	NEW YORK	USA	Medical Library Assistance	000	1	2/7/2019	NEW	$352,350
														Subtotal = $352,350

Grand Total All Awards = $1,409,400

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

Award Number: R01LM013043

ORGANIZATION: NATIONAL LIBRARY OF MEDICINE

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

PERIOD OF PERFORMANCE START DATE: 02/07/2019

PERIOD OF PERFORMANCE END DATE: 01/31/2025

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