Project HealthDesign: Chronology.MD - Personal Health Record Applications for Patients With Crohn's Disease, 2011-2012 (ICPSR 36028)

Principal Investigator(s): 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

Summary:

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.

Series: Project HealthDesign Series

Access Notes

  • One or more files in this data collection have special restrictions ; consult the restrictions note to learn more. You can apply online for access to the restricted-use data. A login is required to apply.

    The data are restricted from general dissemination for reasons of confidentiality. Users interested in obtaining the data must complete an Agreement for the Use of Confidential Data, specify the reasons for the request, and obtain IRB approval or notice of exemption for their research. Apply for access to the data through the ICPSR restricted data contract portal which can be accessed via the study home page.

    Any public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.

Dataset(s)

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Study Description

Citation

Flatley Brennan, Patricia, Deryk Van Brunt, Jonathan Terdiman, and Linda Neuhauser. Project HealthDesign: Chronology.MD - Personal Health Record Applications for Patients With Crohn's Disease, 2011-2012. ICPSR36028-v1. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2015-06-10. https://doi.org/10.3886/ICPSR36028.v1

Persistent URL: https://doi.org/10.3886/ICPSR36028.v1

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Funding

This study was funded by:

  • National Science Foundation (IIS-1343969)
  • Robert Wood Johnson Foundation (67466)

Scope of Study

Subject Terms:    Crohn's disaese, health care, health information technology, observations of daily living, patient care

Geographic Coverage:    San Francisco, California

Time Period:   

  • 2011--2012

Date of Collection:   

  • 2011--2012

Universe:    Persons with Crohn's disease.

Data Type(s):    medical records, observational data

Data Collection Notes:

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.

Methodology

Sample:    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.

Extent of Processing:   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.

Version(s)

Original ICPSR Release:   2015-06-10

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