June 15, 2018

Bloomberg Law quotes Thora Johnson on the federal government issuing guidance on how patient data can be used for research studies

2 min

Thora Johnson was quoted on June 15, 2018, in Bloomberg Law in an article about the federal government reemphasizing its commitment to support research communities by relaxing certain requirements to inform patients how long their data can be used for research studies.

The Health and Human Services Department (HHS) published a draft guidance on June 14, 2018, that relaxes the timeline for when a researcher's right to patient data expires and provides some flexibility for how long that researcher can keep a patient's data. That flexibility is an effort to bolster research, which some say has been stifled due to regulations.

Ms. Johnson said that this recent draft is a follow-up to a 2013 HIPAA rule where the HHS ruled patients could give researchers the rights to their information for future research projects, not just the ones currently underway. It meant one less hoop for scientists to jump through when conducting a study.

In light of recent privacy breaches, Johnson thinks the recent emphasis on controlling one's data is why this guidance document suggests doctors and hospitals remind patients annually of their right to revoke researchers' access to use their personal health information. The reminders aren't mandatory, but this is the first time the agency has suggested it.