Study Finds More Concern About Use of Patient Data Than Consent

December 16, 2014 in News

Consumers are more concerned with how health data are used than whether such information is obtained with patient consent, according to a study published in the journal Annals of Internal Medicine, Reuters reports.

Details of Study

For the study, researchers presented hypothetical examples regarding the use of health data by drugmakers to 3,064 U.S. residents in November 2012 and December 2012.

The examples involved health data being used for either marketing or research purposes with and without prior consent being obtained from patients. Participants were asked to rate the scenarios on a scale of one to 10, with one meaning “not at all appropriate ” and 10 meaning “very appropriate.”


Respondents said that the use of patients’ health data was more appropriate for research purposes than for marketing purposes, regardless of whether patient consent had been obtained.

Using patient health information for commercial purposes without obtaining patient consent had the lowest average rating of appropriateness, at 3.81.

Meanwhile, using patient health data for research purposes with prior consent received the highest average appropriateness rating, at 7.06.

Editorial Calls for ‘Legal Protections’ for All Study Participants

In an accompanying editorial, Columbia University’s Jeremy Simon argues that a study released earlier this year demonstrated the need to develop “legal protections” for “all study participants regardless of where the researcher works” (Seaman, Reuters, 12/15).

For one week in 2012, Facebook manipulated the main news feeds of 689,003 users in an effort to determine how the social media website affects users’ emotions (iHealthBeat, 7/1).

Simon wrote, “The Facebook study shows a substantial gap in our protection of research participants, which can only grow as corporations gain more access to our lives and data.”

He added that until those legal gaps are addressed, researchers and publishers of academic works should not take part in studies that do not provide study participants guaranteed protections (Reuters, 12/15).

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