Results Summary

What was the research about? 

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

What were the results? 

Of patients who responded to the survey

  • Only 26 percent felt comfortable sharing health data that included social security numbers. Patients were more comfortable sharing health data that didn’t include personal information.
  • 87 percent were worried that hackers would steal their data; 73 percent were worried that employers may gain access to patients’ health data.
  • 67 percent were concerned about ways of storing health data; 58 percent said researchers need to be more careful when handling data from children than from adults.

Patients said the most important benefits of sharing data were to help doctors make the best decisions about their health and make new treatments available quickly.

Patients felt more comfortable sharing data if they knew that the study would help others with similar health problems.

Who was in the study? 

The study included 3,516 patients who were members of PatientsLikeMe, an online community. Of these, 86 percent were white, 4 percent were African American, and 4 percent reported mixed race. Also, 42 percent were ages 40–55 and 74 percent were women.

What did the research team do? 

To create the survey, the research team held individual and group interviews with patients. The team also talked with clinicians and researchers. The team then sent the survey to members of PatientsLikeMe by email.

What were the limits of the study? 

The study included members of only one online community. Most were white and had a high school degree. Views on data sharing may differ for patients from other backgrounds.

Future research could include a more diverse group of patients to learn their views about data sharing.

How can people use the results? 

Researchers can use these results when considering ways to address patients’ concerns about sharing and combining health data for research purposes.

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 commented that the study focused on differences in continuous outcomes rather than also including ordinal or binary outcomes, for example. They asked whether the study conclusions about linkage rules depended on the type of outcome and type of effect measure used. The researchers said that although their simulation example focused on a normally distributed continuous outcome, their results should hold for other types of outcome measures, as long as the sample size is large enough and the outcome variables satisfy other assumptions.
  • The reviewers commended the inclusion of a practice guide as an appendix, saying that the guide helps make the statistical concepts in the report more accessible. However, the reviewers suggested that the guide note that studies analyzing heterogeneity of treatment effects benefit from greater statistical power and precision. The researchers added a sentence to the practice guide making this point.
  • The reviewers were curious about the specific computational approaches used in the study, stating that this would be useful information to provide since linking records is a computationally intensive process. The researchers explained that they did not systematically collect information on computational methods used and run times for different models. However, the researchers said they are collecting such information currently and plan to incorporate it into a future revision of their practice guide.

Conflict of Interest Disclosures

Project Information

Sean O'Brien, MS, PhD^
Duke University
$939,944 *
10.25302/07.2020.ME.131008637
Improving Methods for Linking Secondary Data Sources for CER/PCOR

Key Dates

July 2014
September 2019
2014
2019

Study Registration Information

^Soko Setoguchi, MD, DrPH was the original principal investigator for this project.

Final Research Report

View this project's final research report.

Journal Articles

Tags

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: January 20, 2023