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Project HealthDesign: Chronology.MD - Personal Health Record Applications for Patients With Crohn's Disease, 2011-2012

Version
v1
Resource Type
Dataset : medical records, observational data
Creator
  • Flatley Brennan, Patricia (University of Wisconsin-Madison)
  • Van Brunt, Deryk (Healthy Communities Foundation)
  • Terdiman, Jonathan (University of California-San Francisco)
  • Neuhauser, Linda (University of California-Berkeley. School of Public Health)
Other Title
  • Version 1 (Subtitle)
Collective Title
  • Project HealthDesign Series
Publication Date
2015-06-10
Funding Reference
  • National Science Foundation
  • Robert Wood Johnson Foundation
Language
English
Free Keywords
Crohn's disaese; health care; health information technology; observations of daily living; patient care
Description
  • Abstract

    More than 600,000 people in the United States live with Crohn's disease, a chronic and progressive disorder of the digestive system which is most prevalent in young adults ages 18-35. The Chronology.MD team developed two mobile applications to help patients who have Crohn's disease create visually aided narratives of their condition and responses to treatment. Crohn's patients used the Chronology app to enter observations of daily living (e.g., levels of abdominal pain, energy, and stress); enter clinical data (levels of B-12, C-Reactive Protein, HTC and iron in the blood); automatically upload weight data using Withings scales; and automatically uploaded sleep and exercise data from Fitbit body monitors. The Crohnograph app enabled patients to view time trends for tracked ODLs and other data, explore possible associations among them, and show the data visualizations to their health care provider. The providers could document information from the visualization and conversations in clinical notes. This data collection comprises the data collected using the Chronology app from the patients who participated in the Chronology.MD study.
  • Methods

    ICPSR data undergo a confidentiality review and are altered when necessary to limit the risk of disclosure. ICPSR also routinely creates ready-to-go data files along with setups in the major statistical software formats as well as standard codebooks to accompany the data. In addition to these procedures, ICPSR performed the following processing steps for this data collection: Checked for undocumented or out-of-range codes..
  • Table of Contents

    Datasets:

    • DS1: Dataset
Temporal Coverage
  • 2011 / 2012
    Time period: 2011--2012
  • 2011 / 2012
    Collection date: 2011--2012
Geographic Coverage
  • San Francisco, California
Sampled Universe
Persons with Crohn's disease.
Sampling
A convenience sample of 30 patients with moderate to severe Crohn's Disease was recruited from the University of California, San Francisco Medical Center Inflammatory Bowel Disease Clinic. Because most patients were already familiar with mobile applications, the project recruited an intentional subset of patients without such skills. The subjects were 25-54 years old and evenly split by sex. Sixty-one percent were 25-34 years old. Only 28 of the 30 patients used the Chronology app.
Collection Mode
  • Chronology.MD was a project of Project HealthDesign, a national program of the Robert Wood Johnson Foundation designed to stimulate innovation in the development of person health records systems. Additional information about Chronology.MD is available on the Project HealthDesign Web site.

    Additional support for data cleaning and depositing the data with ICPSR came from the Smart Asthma Management program funded by the National Science Foundation.

Note
Funding insitution(s): National Science Foundation (IIS-1343969). Robert Wood Johnson Foundation (67466).
Availability
Download
One or more files in this study are not available for download due to special restrictions; consult the study documentation to learn more on how to obtain the data.
Alternative Identifiers
  • 36028 (Type: ICPSR Study Number)
Publications
  • Neuhauser, Linda, Kreps, Gary L., Morrison, Kathleen, Athanasoulis, Marcos, Kirienko, Nikolai, Van Brunt, Deryk. Using design science and artificial intelligence to improve health communication: ChronologyMD case example. Patient Education and Counseling.92, (2), 211-217.2013.
    • ID: 10.1016/j.pec.2013.04.006 (DOI)

Update Metadata: 2015-08-05 | Issue Number: 6 | Registration Date: 2015-06-16

Flatley Brennan, Patricia; Van Brunt, Deryk; Terdiman, Jonathan; Neuhauser, Linda (2015): Project HealthDesign: Chronology.MD - Personal Health Record Applications for Patients With Crohn's Disease, 2011-2012. Version 1. Project HealthDesign Series. Version: v1. ICPSR - Interuniversity Consortium for Political and Social Research. Dataset. https://doi.org/10.3886/ICPSR36028.v1