Final Research Report

View this project's final research report.

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments. 

Peer reviewers commented and the researchers made changes or provided responses. Those comments and responses included the following:

  • The reviewers asked why the researchers did not prespecify minimum continuous health plan enrollment periods for their study participants. The reviewers noted that allowing for any enrollment period might have affected the researchers’ ability to confirm self-reported diagnoses through health plan records. The researchers responded that they did not want to set a minimum enrollment period because they wanted to include as many participants as possible, in order to include as many patient-powered research network members as possible whose health plan data could be linked. They did report on the duration of continuous health plan coverage to assuage concerns.
  • The reviewers asked for more details about how researchers selected patient-powered research network representatives for interviews and whether any consideration was given to diversity, such as in gender and age. The researchers explained that given limits in budget and time, they decided to try to find a single patient interviewee from each of the seven research networks of interest to ensure that they had representation from each group. The researchers did not feel they were in a good position to identify the patient representatives, so they asked for help from research network leaders in identifying potential interviewees. The researchers received a list of nine patient representatives from the seven networks who were experienced research participants, and they interviewed all nine. The researchers commented that future work could certainly broaden the representation of patient representatives. At this stage, the researchers said they were most interested in assessing the views of highly engaged patient network representatives.

Conflict of Interest Disclosures

Project Information

Kevin Haynes, PharmD, MSCE
A Model for Improving Patient Engagement and Data Integration with PCORnet Patient-Powered Research Networks and Payer Stakeholders

Key Dates

September 2015
June 2020

Study Registration Information


Has Results
Award Type
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022