Mining the Data: Exploring Rural Patients’ Attitudes about the Use of Their Personal Information in Research

Abstract

Background

This study examines rural patients’ perceived importance of knowing or being consulted about researchers’ access and use of their personal data (identifiable and de-identified health information, and identifiable and de-identified non-health information) across five scenarios. This study also examines their views on stewardship or governance of their personal information by researchers in their healthcare systems.

Methods

We conducted a survey by mail. Data were analyzed using descriptive statistics. Multivariable regression analyses were conducted across each scenario and type of personal data with the same variables included in each model.

Results

The majority of participants said it was “very important/absolutely essential” to know the purpose of the study, to be asked every time, and to know the policies governing researcher access and use of their identifiable health information. Just over two-thirds of respondents thought it “very important/absolutely essential” to know who serves on the data governance committee and to have a community member serve. Distrust in healthcare organizations was positively correlated with the scenarios while willingness to give permission to donate leftover biological specimens was negatively correlated.

Conclusion

Our study findings indicate that the type of personal information being accessed and used generally matters to 1,407 patients living in rural Pennsylvania. We also demonstrate that knowing their healthcare organizations’ governance policies and practices for managing their personal data is important to many rural Pennsylvania patients. Biomedical researchers need to recognize and attend to those differences as much as possible in order to expand opportunities for and participation in research by residents of these rural communities.

Supplemental data for this article is available online at

Keywords:

• Data sharing
• data governance
• survey
• electronic health record
• empirical research

Acknowledgments

The authors thank Ms Charity Sauder, Ms Tasha Cochran, Ms Lorna Davis, and Ms Lori Ricard. They would also like to thank all the participants in the study and the manuscript reviewers for their thoughtful comments. This work was supported by the National Center for Advancing Translational Sciences/National Institutes of Health under Grant UL1 TR002014-S3. The content is solely the responsibility of the authors and does not represent the official views of the NIH.

Disclosure statement

No potential conflict of interest was reported by the authors.