Model for Improving Patient Engagement and Data Integration with National Patient-Centered Clinical Research Network (PCORnet) Patient-Powered Research Networks and Payer Stakeholders [Methods Study], United States, 2015-2020 (ICPSR 39639)

Version Date: Mar 23, 2026

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Principal Investigator(s):
Kevin Haynes, HealthCore

https://doi.org/10.3886/ICPSR39639.v1

Version V1

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Summary

Data from healthcare systems, patients and communities, and health plans can support health research. Two types of data sources are

  • Patient-powered research networks, or PPRNs. In PPRNs, patients, families, caregivers, and community members share health data with the network. They work closely with researchers to plan and conduct research.
  • Health plan research networks, or HPRNs. In HPRNs, networks of health plans have access to health claims data from members for research.

By linking patient records across PPRNs and HPRNs, researchers may be able to do more robust research. To link records, researchers use computer programs to connect the records of people in a PPRN with their claims data in an HPRN. Current methods to link records require use of personal information, such as names and dates of birth. But patients may not want to share this information.

In this project, the research team developed methods for linking data from PPRNs and HPRNs without using patients' personal information.

Citation

Haynes, Kevin. Model for Improving Patient Engagement and Data Integration with National Patient-Centered Clinical Research Network (PCORnet) Patient-Powered Research Networks and Payer Stakeholders [Methods Study], United States, 2015-2020. Inter-university Consortium for Political and Social Research [distributor], 2026-03-23. https://doi.org/10.3886/ICPSR39639.v1

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Funding

Patient-Centered Outcomes Research Institute (PCORI) (ME-1503-28785)

Subject Terms

Geographic Coverage

Distributor(s)

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

2015 -- 2020
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Study Purpose

(1) To develop a privacy-preserving data linkage methodology between PPRNs and HPRNs; (2) To understand the patient perceptions of HPRN health outcomes research

Study Design

Using the data exchange technique called hashing, the research team developed a privacy-preserving data linkage method that anonymously linked and identified overlapping participants within four PPRNs and an HPRN.

The research team calculated confirmation rates that measured agreement between PPRN self-reported diagnoses and HPRN claims-based diagnoses for seven clinical conditions. The team evaluated how length of enrollment in a health plan could affect confirmation rates. The team also compared participants with linked data to a reference group of HPRN participants with the same claims-based diagnoses whose data did not link with PPRN participants.

To understand patient perspectives on HPRN research outreach, the research team conducted nine semistructured telephone interviews with patients from seven PPRNs.

PPRN leadership and patients helped develop the method.

Universe

Patients with one of the following conditions: breast or ovarian cancer, inflammatory arthritis, multiple sclerosis, or vasculitis

Data Source

4 disease-specific PPRNs with data from 21,616 members who have, or support people with, one of the following conditions: breast or ovarian cancer, inflammatory arthritis, multiple sclerosis, or vasculitis

Longitudinal administrative health claims data within the HealthCore Integrated Research Environment for 60 million patients with commercial health insurance

Semi structured interviews with 9 patients from 7 PPRNs

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Original Release Date

2026-03-23

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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.