Best Policies For Securely Sending Data

By Katie Wike, contributing writer

An Institute of Medicine report outlines best practices for safely transmitting digital data for research.

The Institute of Medicine (IOM) released a report outlining best practices for providers to securely send research data. “Policies for granting access to data should be in the service of several goals — protecting the privacy of participants; reducing risk of invalid analyses or misuse; avoiding undue burdens on data users and harm to investigators and sponsors; and enhancing public trust in clinical trial data sharing,” the committee members state in the report.

According to Health IT Security, the public must trust the way their data is transmitted in order to encourage them to share for scientific research. The IOM feels data sharing should balance the following three goals:

1. allow a fair opportunity for clinical trialists to publish results before secondary investigators gain access to the data

2. allow secondary investigators to access unpublished trial data after a fair period has passed or reproduce the findings of a published analysis

3. protect the commercial interests of sponsors in gaining regulatory approval for a product so that they receive fair financial rewards for their investment

“Greater data sharing could enhance public well-being by accelerating the drug discovery and development process, reducing redundant research, and facilitating scientific innovation. Before these benefits can be realized, however, stakeholders must confront significant risks and challenges,” conclude researchers.

Health IT Outcomes reported that a University of Pennsylvania Perelman study found patients were willing to share their health data, but were more willing to allow it for research than marketing. Patients surveyed showed a desire to share their information when it would be used to improve care.