Creating a Patient Registry to Facilitate Data Sharing and Encourage Patient-Centered Approaches to Improving Health and Lowering Costs, 2013 (ICPSR 35570)

Principal Investigator(s): Harnett, Brett, University of Cincinnati. College of Medicine


This interventional pilot study was conducted in a primary care clinic to determine if patients would become more engaged in their own health and ask more questions of their physicians if they were provided data about patients similar to themselves. The study was conducted with 150 patients with a diagnosis of hypertension who had scheduled appointments with one of three participating physicians in the clinic. When they arrived at the clinic for their appointment, the patients were shown de-identified clinical data about similar patients with hypertension on a computer screen, given a printout of this information, and then proceeded to visit their physician. After the physician visit the patients completed a short survey. Their answers to the survey questions are recorded in the data file together with additional information about them, such as age, gender, race, smoking status and comorbidities.

The three participating physicians completed a short survey at the end of the study. The results of that survey are summarized in a table provided with the technical documentation.

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 - Download All Files (4.958 MB)

ASCII + SPSS Setup   

Study Description


Harnett, Brett. Creating a Patient Registry to Facilitate Data Sharing and Encourage Patient-Centered Approaches to Improving Health and Lowering Costs, 2013. ICPSR35570-v1. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2016-10-05.

Persistent URL:

Export Citation:

  • RIS (generic format for RefWorks, EndNote, etc.)
  • EndNote XML (EndNote X4.0.1 or higher)


This study was funded by:

  • Robert Wood Johnson Foundation (70228)

Scope of Study

Subject Terms:    chronic illnesses, health care, patient care

Geographic Coverage:    Cincinnati, Ohio, United States

Time Period:   

  • 2013-09--2013-12

Date of Collection:   

  • 2013-09--2013-12

Universe:    English speaking patients aged 21 or older with a diagnosis of hypertension.

Data Type(s):    event/transaction data, medical records, survey data

Data Collection Notes:

The technical documentation comprises the codebook and an Excel workbook. The latter is provided in a ZIP archive which also contains a PDF rendition of the workbook. The workbook contains enrollment statistics and tables from the patient and physician surveys, while the codebook contains the study protocol, ICPSR processing notes, frequencies and descriptive statistics, and describes the column locations of the variables in the column-delimited plain text version of the data file.


Sample:    Convenience sample based on inclusion/exclusion criteria and those already scheduled for a physician appointment.

Mode of Data Collection:    record abstracts, coded on-site observation, on-site questionnaire

Response Rates:    88 percent

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:

  • Created variable labels and/or value labels.
  • Checked for undocumented or out-of-range codes.


Original ICPSR Release:   2016-10-05



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