Tag Archives: Distributed research network

Study Examines Public Attitudes Toward Data-Sharing Networks

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A new study examining public attitudes about the sharing of personal medical data through health information exchanges and  distributed research networks finds a mixture of receptiveness and concerns about privacy and security. The study, conducted by researchers from the University of California, Davis and University of California, San Diego and published online in the Journal of the American Medical Informatics Association (JAMIA), reports results from a telephone survey of 800 California residents. Participants were asked for their opinions about the importance of sharing personal health data for research purposes and their feelings about related issues of security and privacy, as well as the importance of notification and permission for such sharing.

The authors found that a majority of respondents felt that sharing health data would “greatly improve” the quality of medical care and research. Further, many either somewhat or strongly agreed that the potential benefits of sharing data for research and care improvement outweighed privacy considerations (50.8%) or the right to control the use of their personal information (69.8%), although study participants also indicated that transparency regarding the purpose of any data sharing and controlling access to data remained important considerations.

However, the study’s investigators also found evidence of widespread concern over privacy and security issues, with substantial proportions of respondents reporting a belief that data sharing would have negative effects on the security (42.5%) and privacy (40.3%) of their health data. The study also explored attitudes about the need to obtain permission for sharing health data, as well as whether attitudes toward sharing data differed according to the purpose (e.g., for research vs. care) and the groups or individuals among which the data were being shared.

The authors note that while data-sharing networks are increasingly viewed as a crucial tool for enabling research and improving care on a national scale, they ultimately rely upon trust and acceptance from patients. As such, the long-term success of efforts aimed at building effective data-sharing networks may depend on accurately understanding the views of patients and accommodating their concerns.

Read the full article here: 

Kim KK, Joseph JG, Ohno-Machado L. Comparison of consumers' views on electronic data sharing for healthcare and research. J Am Med Inform Assoc. 2015 Mar 30. pii: ocv014. doi: 10.1093/jamia/ocv014. [Epub ahead of print]

Developing Approaches to Conducting Randomized Trials Using Mini-Sentinel: Webinar and White Paper

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A recent webinar (see recording) covered a collaborative effort of the Clinical Trials Transformation Initiative (CTTI) and the FDA Mini-Sentinel project in which investigators are exploring the possibility of using the Mini-Sentinel distributed database infrastructure to conduct randomized, multicenter clinical trials. Speakers Richard Platt, MD, MS, of Harvard Pilgrim Health Care Institute, and Patrick Archdeacon, MD, of the FDA, summarized the work and discussed next steps that will continue to advance the project.

A white paper published earlier this year, Developing Approaches to Conducting Randomized Trials Using the Mini-Sentinel Distributed Database, describes the results of the investigator analysis in greater detail. The white paper is the product of the CTTI Uses of Electronic Data project.