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 Using health data and information for research was more appropriate
than for marketing regardless of whether they were asked for
permission or not, most people felt.
“What we found is that consumers care a lot about how their health
information is used,” said Dr. David Grande, the study’s lead
researcher from the University of Pennsylvania Perelman School of
Medicine in Philadelphia. “What’s surprising is they care more about
what it’s being used for than whether consent was obtained.”
Grande and his colleagues write in the Annals of Internal Medicine
that electronic medical records increase the availability of
detailed information about people’s health.
The information can be used for a variety of purposes, including
research, disease surveillance and measuring the quality of
healthcare services. Companies also find the information to be a
valuable marketing tool. For example, it can help the company
understand why doctors choose one drug over another.
There have been calls to change the way patients give consent for
their health data and information to be used, the researchers write.
The U.S. Department of Health and Human Services has proposed new
guidelines that would relax the requirement for consent from
patients when there is little risk from using the data, they add.
“I think many of these policy discussions about privacy have come
from smart people sitting in a room and what they think ethically
and how people ought to be protected, but we don’t often go out and
ask individuals how they want it to be used,” Grande said in a phone
interview.
For the new study, the researchers showed hypothetical scenarios to
3,064 people in the U.S. in November and December 2012.
The hypothetical scenarios offered different accounts of health data
and information being used for research or commercial purposes when
consent was or was not obtained from the patient.
For example, participants were asked if it’s appropriate to use the
records of thousands of patients to identify those with diabetes and
see which medications they’re taking in an effort to improve care.
In a different scenario, participants were asked if it’s appropriate
for drug companies to use that information to learn what types of
people use their products.
Appropriateness was rated on a scale from 1 to 10, with 1 “not at
all appropriate” and 10 “very appropriate.”
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The lowest rating from participants - an average of 3.81 - was for
using health data for marketing when consent was not obtained. The
highest rating - an average of 7.06 - was for using health
information for research when consent was obtained.
Overall, people rated the appropriateness of using medical
information higher for research purposes whether consent was
obtained or not, compared to having the information used for
marketing purposes – even when permission was obtained.
In an editorial published with the study, Jeremy Simon from Columbia
University in New York City wrote about a controversial study
published this year in the Proceedings of the National Academy of
Sciences.
The study was based on an experiment in which the social media
company Facebook manipulated the experience of its users without
their informed consent. Although consent is a standard best practice
in research, the study was published by researchers in a
peer-reviewed journal.
“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,” Simon writes. “Ultimately, the
solution needs to be societal, with legal protections extended to
all study participants regardless of where the researcher works.”
Until that happens, he said, academic researchers and publishers
should refuse to participate in studies that do not guarantee
protection to participants.
Grande said people should know the information they give to
healthcare providers is very safe. “That identifiable information is
quite secure,” he said.
Instead, he said people should be cautious about disclosing
information about their health in other settings, such as for
healthcare loyalty programs or surveys.
SOURCE: http://bit.ly/SQRXAa Annals of Internal Medicine, online
December 15, 2014.
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