Individuals are more willing to allow their electronic data be used for research once they understand not only the complexity of gathering and using it, but also that safeguards are in place to protect its confidentiality, according to a new study in the Journal of Community Genetics.
The researchers, from the University of Utah Health Care, showed 131 participants a 12-minute video on electronic health records and biospecimen collection, along with an explanation that the data being culled included gender or age-related information, not individually identifiable information. They then conducted focus group sessions regarding the research and its methods.
They found that peoples' attitudes about allowing their data to contribute to research changed once they had a better understanding of the process.
"The most important finding from this study was that people, when educated about the safeguards, were fine with their information or tissue being used for research without their signed consent," co-investigator Erin Rothwell, Ph.D., said in a statement. "They were okay with it as long as they had the option to opt out if they wanted."
The researchers were surprised at how little people knew that safeguards existed to keep the records private, and suggested that the next step is to better inform the public about these issues on a "routine basis."
Other studies have pointed out the data in EHRs holds great promise for research and other secondary uses. However, many consumers do not believe that their electronic data is safe and do not trust others to keep it secure.
To learn more:
- read the announcement