[Med-privacy] Sabbatical planning assistance request
Linda W Goodwin
goodw010@mc.duke.edu
Tue, 20 Sep 2005 09:57:13 -0400
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I follow your Med-privacy list with great interest and have a question.
I'm a health care worker and also a dismayed citizen who feels like
our patient privacy has been significantly eroded since HIPAA and 9/11
(and it wasn't great before). I heard a speaker last week describe a
project (http://www.ncedd.org/NCHESS-EDDI.html) where every ER
patient's data in North Carolina is sent to a vendor in IL where a
state ER registry is compiled. The NC Hospital Assn gets what he
called de-identified data, but the demo we saw included patient number.
They managed to pass this as a law by partnering with the NC Dept of
PH and claiming bioterrorism surveillance. I can see where the Public
Health folks are, perhaps, legitimate users of this kind of data (and
they get data with identifiers). But between the demo we saw last
week and the "inpatient and ambulatory surgery" data reported on their
web site, I questioned what the hospital association is doing with this
data? I am certain that consumers do not know their data is being
used by this group, and the only answer I got from our speaker was they
used it for trending. I know there are lots of different
health-related registries and I suspect many of them may be widely
used, but I'd be curious to learn more about how registry data is used,
by whom, and for what purposes.
Health care privacy erosion seems futile to resist and hopeless to
change right now. But I am beginning to plan a sabbatical for next
year and wonder if you have any thoughts on where to begin with
educating the public as to these types of issues and doing research
around patient awareness, trust, etc. I've got a small consumer
awareness pilot study completed and data collected for nurses'
awareness but haven't yet begun data analysis. My own research has
worked with data mining for preterm birth predictors. I'm also
interested in de-identification of large data sets for research and
protecting patient privacy, but I am more interested right now in
complex aspects of consumer awareness and privacy protection.
Thanks in advance for any thoughts you might have. (And thanks Peter
for pointing me in the right direction!)
================================
Linda Goodwin, RN, BC, PhD
Duke University School of Nursing
Director, Nursing Informatics Program
Community and Family Medicine (Secondary Appt)
Box 3322 DUMC -- Durham, NC 27710
919 684-3786 x 252 (voice)
919 681-8899 (fax)
linda.goodwin@duke.edu (email)
http://www.duke.edu/~goodw010
================================
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<br><font size=2><tt>I follow your Med-privacy list with great interest
and have a question. <br>
<br>
I'm a health care worker and also a dismayed citizen who feels like <br>
our patient privacy has been significantly eroded since HIPAA and 9/11
<br>
(and it wasn't great before). I heard a speaker last week describe
a <br>
project (http://www.ncedd.org/NCHESS-EDDI.html) where every ER <br>
patient's data in North Carolina is sent to a vendor in IL where a <br>
state ER registry is compiled. The NC Hospital Assn gets what he
<br>
called de-identified data, but the demo we saw included patient number.
<br>
</tt></font>
<br><font size=2><tt>They managed to pass this as a law by partnering with
the NC Dept of <br>
PH and claiming bioterrorism surveillance. I can see where the Public
<br>
Health folks are, perhaps, legitimate users of this kind of data (and <br>
they get data with identifiers). But between the demo we saw last
<br>
week and the "inpatient and ambulatory surgery" data reported
on their <br>
web site, I questioned what the hospital association is doing with this
<br>
data? I am certain that consumers do not know their data is
being <br>
used by this group, and the only answer I got from our speaker was they
<br>
used it for trending. I know there are lots of different <br>
health-related registries and I suspect many of them may be widely <br>
used, but I'd be curious to learn more about how registry data is used,
<br>
by whom, and for what purposes. <br>
<br>
Health care privacy erosion seems futile to resist and hopeless to <br>
change right now. But I am beginning to plan a sabbatical for next
<br>
year and wonder if you have any thoughts on where to begin with <br>
educating the public as to these types of issues and doing research <br>
around patient awareness, trust, etc. I've got a small consumer
<br>
awareness pilot study completed and data collected for nurses' <br>
awareness but haven't yet begun data analysis. My own research has
<br>
worked with data mining for preterm birth predictors. I'm also <br>
interested in de-identification of large data sets for research and <br>
protecting patient privacy, but I am more interested right now in <br>
complex aspects of consumer awareness and privacy protection. <br>
<br>
Thanks in advance for any thoughts you might have. (And thanks Peter</tt></font>
<br><font size=2><tt>for pointing me in the right direction!)<br>
<br>
<br>
================================<br>
Linda Goodwin, RN, BC, PhD<br>
Duke University School of Nursing<br>
Director, Nursing Informatics Program<br>
Community and Family Medicine (Secondary Appt)<br>
Box 3322 DUMC -- Durham, NC 27710<br>
919 684-3786 x 252 (voice)<br>
919 681-8899 (fax)<br>
linda.goodwin@duke.edu (email)<br>
http://www.duke.edu/~goodw010<br>
================================<br>
</tt></font>
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