Improving Methods for Linking Secondary Data Sources for Comparative Effectiveness Research (CER)/Patient-Centered Outcomes Research (PCOR) [Methods Study], United States, 2008-2019 (ICPSR 39614)

Version Date: Dec 15, 2025

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Principal Investigator(s):
Sean M. O'Brien, Duke University

https://doi.org/10.3886/ICPSR39614.v1

Version V1

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Summary

Researchers often combine patient health data from different sources, such as claims and health records. These data contain personal information, such as names and social security numbers.

In this study, the research team wanted to learn patients' views on sharing and combining health data for research. The team surveyed patients about their views on

  • Sharing health and personal data, such as social security numbers
  • Benefits and risks of data sharing
  • Ways to help patients feel comfortable sharing health data

Citation

O’Brien, Sean M. Improving Methods for Linking Secondary Data Sources for Comparative Effectiveness Research (CER)/Patient-Centered Outcomes Research (PCOR) [Methods Study], United States, 2008-2019. Inter-university Consortium for Political and Social Research [distributor], 2025-12-15. https://doi.org/10.3886/ICPSR39614.v1

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Funding

Patient-Centered Outcomes Research Institute (PCORI) (ME-1310-08637)

Subject Terms

Geographic Coverage

Distributor(s)

Inter-university Consortium for Political and Social Research
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Time Period(s)

2008 -- 2019
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Study Purpose

To develop new methods and guidance for optimizing record linkage without direct personal identifiers in CER/PCOR studies and to understand patient perspectives on the risks and benefits of record linkage.

Study Design

Because health data contain sensitive health and personal information, linking records for research from multiple sources, such as claims and electronic health records, raises patient privacy concerns. Creating a patient-centered assessment of the benefits and risks of data sharing and linkage is important to improve strategies for protecting patient privacy. This study analyzed patient questionnaire responses to understand patient perspectives about data sharing and linkage.

To develop the questionnaire, the research team held discussions with clinicians and researchers and sought input through message board conversations, in-person interviews, and focus groups with members of PatientsLikeMe (PLM), an online patient community. The team then piloted the questionnaire with PLM members who had been active in the community during the previous 90 days. The final questionnaire had six modules, including comfort levels with sharing and use of electronic health record data, changes in comfort level with removal of specific identifiers, perceived benefits of data sharing and linkage, perceived risks of data sharing and linkage, strategies to improve comfort with data sharing, and data sharing behaviors and beliefs.

Universe

Patients who were members of PatientsLikeMe, an online patient community, in 2015 and 2016

Data Source

Questionnaire responses from 3,516 patients who were members of PatientsLikeMe in 2015 and 2016

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Original Release Date

2025-12-15

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Notes

  • The 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.

  • ICPSR usually offers files in multiple formats for researchers to be able to access data and documentation in formats that work well within their needs. If you have questions about the accessibility of materials distributed by ICPSR or require further assistance, please visit ICPSR’s Accessibility Center.

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This study is maintained and distributed by the Patient-Centered Outcomes Data Repository (PCODR). PCODR is the official data repository of the Patient-Centered Outcomes Research Initiative (PCORI).