Webinar: Resources for Health Research at ICPSR

[Peter] Okay thank you very much Linda. And
welcome to all of you who are out there where hopefully it’s a bit warmer than
it is in Ann Arbor. We’re going to present a lot of information today on
health… resources available on health research at ICPSR. I just thought I’d
briefly go through the learning objectives for this webinar, which is to
-Identify and describe the data files that we do have here, -Discuss something
about our online tools, and -Provide you with some information on other health
related resources that we have, and also -Highlight some training opportunities as
well. So this is a list of speakers and my name is Peter Granda as Linda said
and I will be followed by John Marcotte, James McNally, Amy Pienta, John Garcia, and
Mary McEniry. And we all have some responsibilities over many of the health
data sets that we have at ICPSR. My colleagues and I are Directors of
special topical archives that focus on different aspects of health data and
we’ll all be talking about those special archives today. I’m the Director of the
Health and Medical Care Archive which is called HMCA. But one of the things I
wanted to talk about also was that as members of ICPSR, our members schools and
colleges also have access to some unique holdings that we have. So we do
have health related data spread throughout ICPSR. And of course that data
that’s available to members is freely available because of their membership.
We also have other we also have some health related data sets that are also
restricted because of confidentiality issues and we do have a procedure
whereby you can order those data sets and John Marcotte will be speaking a
little bit more about those as we go along. So here are a couple of examples
of data collections that we have that are
available to the membership through our General Archive. And they range from very
specific data sets, some of the Cross- National Perspective, as you can see here,
to things like the New York City Community Health Surveys and also some
Data series that we’ve acquired over a long period of time for many of the
agencies within the US Government that collect health data. And this was long
before they were putting some of their data up on their own websites.
So we’ve got lots of historical data on such surveys as the National Hospital
Discharge Survey and the National Medical Expenditure Survey and the
National Health Interview Surveys that we’ve gotten from these agencies as well.
So let me just say a few words about HMCA, which is the Health and Medical Care
Archive. This is the homepage of that site which is available through ICPSR’s
web pages as well. One of the interesting things about HMCA is that it’s,
I think it’s the only data special topical archive we have that’s funded by
a foundation. In this case it’s funded by the Robert Wood Johnson
Foundation and this is one of our oldest, actually one of our oldest topical
archives it goes back to 1985. And it’s important because the foundation, while
they spend a lot of money on all kinds of health issues, they do a lot of
support of health surveys as well. And one of the things that they’ve done from
a very early period of time is to recognize how important it is for their
researchers to not only collect the data but to archive it and make it
available to other researchers. So they have established this HMCA archive for
just that purpose. And anyone who collects… gets a grant from Robert Wood
Johnson that involves collecting data, they have to make a promise to deposit
their data at ICPSR. This also just like our other, you’ll hear about our
other collections includes both public and restricted-use data. We also do
some summer workshops as I will mention in a second also.
The Robert Wood Johnson collection and HMCA encompasses lots of
different aspects of health care including information about
professionals and organizations who work in that field, investigations about
access to medical care, and surveys on substance abuse and all different kinds
of programs that deliver health care to the population. Just in terms of
training, we’ve had two very successful workshops held in the last two years on
health disparities. We’re expecting to hold another workshop not this year but
in 2015. We don’t know if it will be on health disparities again, but this is
another feature that the foundation supports is being able to provide these
workshops for users to come. We had a very great turnout for both of these
workshops. In fact, we had to turn many people away because they were so popular.
Just in terms of our number of surveys I’ve just put up a few here on the
screen for you to see. We have over 125 different data collections in the Health
and Medical Care archive. Two of the most important ones you see are the CTS
or Community Tracking Study and Health Tracking Household and Physician Surveys
which go back over a decade now and have repeating cross-sectional samples that
look at health care among the population and also the attitudes of physicians. And
also the Integrated Public Health Surveys which is a new harmonized data
set that records information about public health departments in the United
States both at the state, county, and local levels. Finally we’ve even
gotten newer kinds of data sets in health that just are not specifically
related to health issues but, in this case, Public Health Law is a very nice
project at Temple University with the website you see… URL you see listed here
which is creating data sets about how public health law affects health as well.
So that’s just a very small sample of the things that we have in HMCA. And now
I’m going to turn it over to John Marcotte who is going to talk about his archive, the Substance Abuse and Mental Health Data Archive. [John] Good afternoon, welcome. I’m John Marcotte.
I’m the Director of the Substance Abuse and Mental Health Data Archive. I’m
going to tell you a little bit about our archive and the data that’s in that
archive. First thing to keep in mind is that SAMHDA is an initiative of the
Substance Abuse and Mental Health Services Administration, SAMHSA, that’s
with an S instead of an H, the US Department of Health and Human Services
and also that SAMHDA is one of the topical archives at ICPSR. And we are one
of the top of our archives that includes health data. SAMHSA is a government agency
that is responsible for the collection, analysis, and dissemination of behavior
health data. SAMHDA is essentially the arm of SAMHSA that distributes their data.
We provide data and we provide online analysis tools. SAMHDA has two overall
purposes. The first purpose of SAMHDA is to make data available to people. And we
make that data available mostly as public-use data sets, but sometimes in
restricted-use data form. The key thing is we make the data in an appropriate
manner. We also provide online analysis tools that you can go to our website and
perform some analyses. Typically cross tabs, or trying to get prevalence rates
for different issues. Some of the data in SAMHDA is: we have the National Survey on
Drug Use and Health (NSDUH). We have DAWN, the Drug Abuse Warning Network. We have a
number of data sets that are more than just surveys, they’re actually are data
that are administrative records. One of them is TEDS, which is the Treatment
Episode Data Set for Admissions. We have a Survey of Substance Abuse. A new survey that we recently are
putting out is the National Mental Health Services Survey. We have a survey
on drug and alcohol. We have National Treatment Improvement Evaluation Study,
and we also have the Substance Abuse and Treatment Cost Allocation Analysis
Template. Virtually any data set that SAMHSA has collected and they can
distribute, we have for them. What are some of our online analysis tools that
are available in SAMHDA? We have Quick Tables which allows you to go to our
website and generate tables that are commonly needed or commonly requested
easily. We have online analysis using the Survey Documentation and Analysis system
created by the folks at Berkeley that allows you to bring up certain data sets
and analyze online the same as you’d analyze it with SPSS or SAS. We have
something that we call the Restricted Data Analysis System or R-DAS which
uses an underlying engine of secure SDA, but the key difference here is it has
some built-in disclosure restrictions. If your results do not meet disclosure
requirements they will not be displayed. And our last system is the Data Portal
which uses the ICPSR’s Virtual Data Enclave system. And what that allows you to do is
if you have an approved project, you can log into our system, our online system,
analyze the data there, it has all the analysis tools, and then when you’re
ready you submit your results for vetting. The SAMHDA website is www.datafiles.samhsa.gov that’s the official URL that you get through the government. Our email,
which we’re happy to hear from you, is at [email protected] and we have a
toll-free number as well for people to all in if they need help with data sets. Now I’m going to turn my attention to
restricted-use data at ICPSR, in general. And the thing to keep in mind as well,
most of the data in the archives at ICPSR are available for public-use. And
by that you can just go to our website and download. The restricted-use data
require a little bit more of an effort and they’re becoming a lot more common.
Some examples that we have of restricted-use data are: Add Health, the
National Longitudinal Study of Adolescent Health, the Sexual Acquisition and
Transmission of HIV, and Health Tracking Household Survey. What that means for
restricted-use data is you have to apply for access. The key thing is restricted-
use data refers to how data can be accessed. Typically restricted-use data
have sensitive information in them and they have a generally a non-low level of
disclosure risk. That is the data potentially could be re-identified. I want you to
keep in mind that we never release data that have direct identifiers. We never
have data that have names, addresses of respondents, but however some data can
form a profile and could potentially be used to identify an individual. We take
the protection very seriously and it requires some extra protection to
protect from unauthorized access. We have online analysis tools that we use to
provide the appropriate protection and at the same time allow researchers to
use the data. We both want to protect the data and allow researchers to use the
data. So here we have two online systems for dealing with the restricted-use
data. One is what I alluded to earlier in the SAMHDA presentation which is Secure
Survey Documentation and Analysis. It returns summary results only and you
have to agree to terms of use to use it and any results that are deemed as not
being appropriate will be suppressed. So there’s certain variables that you can’t
look at in Secure SDA, certain cross tabs that are not available. Our other system
which we’re very proud of is our Virtual Data Enclave. Now in the Virtual Data
Enclave you can make… you get access to the microdata and you can perform your
analysis within the VDE but then what’s important is that your results are then
vetted for disclosure risk. Rather than trying to vet the data at the beginning
for disclosure risk we’re vetting data for disclosure risk when you produce
your results, your tables for potential publication or report. The key difference
with Secure SDA is that you need a data use agreement. And
a data use agreement means that you need to apply for use of the data, and
that you have to have IRB approval, and you need an institutional agreement. Secure SDA, as I said before, is
developed at the University of California Berkeley. It has some of the
same functions as STA but with some built-in disclosure protections. As I
said you can only produce summary statistics. You don’t get access to the
microdata, you only get access to results. The Virtual Data Enclave provides access
to restricted-use microdata and we use VMware so people need to use the VMware
client, which is the view client is free, you can download it, and it provides a
virtual Windows 7 desktop for analysis. The nice thing about the VDE is it’s a
confined environment without access to other networks or the internet. You can’t
copy files to and from the VDE. They must be reviewed, that is vetted, for any
kind of disclosure risk. [James] Good afternoon my name is James McNally. I direct the
NACDA Program on Aging which is primarily driven by our data archive, the
National Archive of Computerized Data on Aging. NACDA is funded by NIA to
collect, process, and redistribute pretty much any data set that touches on the
aging life course. This is our web page. We really recommend that you visit our
web page and do some searching. We’ve got about 1600 studies that touch in some
way on aging, or the aging life course, socio-economic aspects of aging, or other
things. We have three primary goals: we acquire preserve data sets of scientific
importance, we distribute these data and documents in a manner that makes their
use easy and cost-effective for research, and we contribute to the intellectual
vitality of the gerontological sciences. That’s been our mission since we were
first funded back in 1978. We cover a wide range of aging issues as part of
our collections. Some of them are biomedical, some of them are strictly
social, some of them are family, and some touch upon more strictly
clinical issues. We have a growing collection of biomedical and clinical
studies, which is quite nice as there’s been a lot of resistance to sharing
those data over the years. We’re primarily interested in elderly health and
well-being. I want to talk briefly about some of the emerging research topics we
see evolving in the gerontological research area. Particularly early impacts on later
life outcomes, cradle to grave studies as they’re called in some areas. The growth
of international comparative data on aging and new studies on sexuality,
health, and social interactions among the aged. And we have some specific data
sets, that I’ll touch on that deal directly with these topics but we also
have any number of related studies that you would find searching through our
collections on the website. Project TALENT is a study we’ve been working on
for several years with the American Institute on Research in Washington DC, AIR. Back in the 1960s they collected interviews of about a half a million
high school students and they collected quite a bit of cognitive intelligence
and life goals information. And AIR has managed to keep track of most of these
people. They’ve done several follow-ups through the years, but right now they’re
interested in looking at later life outcomes for these people as they enter
their 60s and early 70s. This is what we consider an entry level study. The AIR
and NACDA are actively looking for research partners who could see research projects
which would involve a sample of people from this very large high school cohort
that was collected in the 1960s. Right now they’re doing proof of concept
studies to prove that they can recontact people and also doing some re-interview work. So it’s an interesting project and its
wide open. We’re very interested in seeing partners. And it’s the only study, to
my knowledge, with this size of a population that is available for
secondary analysis. You can download the baseline data directly from the NACDA
website, all half million cases, and look at the early cognitive studies. And we
also have the follow-ups available upon request. In a slightly more structured
format we have the SAGE studies which is the World Health Organization studies on
global aging and adult health. These studies are interesting in a number of
ways. One they’re looking at developing country with harmonized and comparable
measures, but also they can be compared directly to other major national studies
such as the HRS in the United States, ELSA in the United Kingdom, the SHARE studies
in Europe, and the emerging growth of HRS- like studies in China, India, and Korea.
These are all available directly for download, they’ve been under-utilized
until recently and there’s lots of research potential in these studies. We
also have a variety of other international studies that you could
also find on our website but we like SAGE, we’re promoting it right now. The
[unintelligible] of adult interactions, the NSHAP National Social Life, Health and Aging
Project. It just recently released the second wave of data. Both waves are
available under a restricted-use agreement through NACDA. If you go to the
NACDA web page, you can get instructions on how to obtain the data. The second wave
follows up the first wave. Now what’s interesting about the study is it got
very detailed information, not only on the socio-economic characteristics of
the elderly, but also on their social networks, their health status, the medication, the medications they take, mental health, and a
very detailed sexual history. They asked old people intelligent questions about
their sex lives and they got intelligent questions back. It’s a very unique, quite
fascinating study. And now with two waves available and the third wave on the way,
in the next year or so, we expect to see a lot of really good research coming out
of this study. Now in terms of research development we’ve been working very
closely with the biomedical and the clinical studies researchers over the
past few years to develop our collections and to increase the
willingness of these groups to share their data for secondary analysis. Our
project is basically to review the health related data collections of
existing studies and those currently being collected. So we’re looking at
people who have been funded to collect these data. We’re talking to established
researchers who have interesting data sets. We want to organize this
information and make it searchable through the NACDA website. And we want
to explore information outside the NACDA collections. The heart, lung, and
blood group at NIH, for example has any one of a number of fascinating studies
that we don’t support and we don’t have in our collections but we can certainly
point to. And we’re interested in developing mechanisms to make the
metadata available through the NACDA website. One of the successes we’ve had
recently is the SWAN study, which some health researchers may be aware of, a
study of women’s health across the nation. This is now available through
registered download at the NACDA website. We have about 10 waves, 10 to 11 waves
of the study that we’re working on. We’ve got five or six available for use at the
moment. And if you’re interested in mid-life change among women, menopausal
development, and associated health factors it’s a fascinating study and it
has not been used heavily by the social science researchers and by, quite frankly,
health researchers because of restrictions on access. In conclusion, our
mission at NACDA is to help. We’re facilitators, we’re funded by the Federal
government to help people do their research better. If you’re interested in
doing research on aging, if you’re interested in developing a research
project then we’re available to talk to you about it. If we have the data sets we
want you to get them, we want you to publish, we want you to have successful
grants. And if we don’t have data sets you think are important we want to hear
about it so we can go out and try and get them so the research community can
continue to benefit from the NACDA project. Thank you. [Amy] Hi everyone I’m Amy
Pienta. I’m an Associate Research Scientist here at ICPSR and Director of
Acquisitions. But I’m here today to talk to you about two health related archives
that I oversee. The first is the National Addiction and HIV Data Archive Program
which is funded by the National Institute on Drug Abuse. So here on this
screen you’re looking at a screenshot of our website on the right. Our goal
through NAHDAP has been to provide technical assistance and outreach to
researchers who are collecting substance abuse and HIV data so that it’s easier
for them to share their data. In the field of substance abuse there has been
many challenges to overcome with respect to sharing that kind of data widely.
The kinds of sensitive data that are collected, the very long term
longitudinal studies that researchers tend to collect to follow people over
time create tremendous barriers to sharing data and as such these kinds of
data have not been very widely available until NIDA saw fit to put together
resources to create an infrastructure, a specific infrastructure,
for sharing these kinds of complex data here at the University of Michigan. So we
provide technical assistance to researchers and also provide data
through a topical website at ICPSR, much like my colleagues have already
described to you. So this topical archive is built on ICPSR’s infrastructure. Our
website launched in 2010, we’re one of the newer kids on the block here with
respect to health data at ICPSR and we’re happy to be doing this work. So as
I mentioned because of the challenges with the sensitive information that’s
included in the files that researchers in the field that we serve tend to have,
we have some public-use data sets that can be fully de-identified and shared
through download through our ,through the NAHDAP and ICPSR website. But we have
many many restricted data collections. John Marcotte did a wonderful job of
describing the different mechanisms of how to access our restricted collections
and we use those at NAHDAP as well. But I want to tell you a little bit
about, sort of, the scope of what it is that you’ll find if you take a look at
the NAHDAP website. The studies that we’ve archived tend to be focused on, sort of,
mid-size studies that NIDA has funded. Investigator-initiated research
projects are, sort of, one of the collection aims that we’ve been trying
to achieve. So there are large scale studies as well that we focus on. But we wanted to make sure that there was adequate resources
devoted to investigator-initiated research projects as well. We focus on
the long-term longitudinal data sets so that people can analyze change over time
in substance use, and treatment, and prevention, and all the topics of
interest to researchers in this area. We have wide-ranging topics on drug use and
HIV, but our bent is towards studies that have an epidemiological perspective,
prevention research, RCT data. Those are the kinds of data sets that we
tend to have most of at NADHAP. I’m just going to mention a few data
highlights. We do distribute the Monitoring the Future Study. Monitoring
the Future is partly funded by NIDA, I think there are other funding sources as
well. But Monitoring the Future is a tremendous data set. It’s an ongoing
cross-sectional study that’s conducted annually, actually here also at the
University of Michigan in the Institute for Social Research. So since 1975 a
cohort of students, of high school students and also 8th grade students is
interviewed, and not followed necessarily over time but rather a
repeated cross-section. So since 1975 you can look at trends and drug use among
our young population with the Monitoring the Future data set. And then I just
wanted to provide some examples of the long-term longitudinal studies that we’re
working on making available. The Flint Adolescent Study has been following
students for nearly 20 years. The Iowa Adoption Studies began in the 1970s
looking at issues around substance abuse among adoptees. And those
studies go for long extended longitudinal periods of time as well.
The Maternal Lifestyle Study is looking at women who used crack cocaine during
pregnancy and follows those women and their babies as they were born again for
over 20 years. So those are the kinds of data sets that you will find at the
NAHDAP website. I’m going to turn quickly to the other health project that I
wanted to describe to you the AHRQ Multiple Chronic Conditions project. I
want to start with a little bit, paint a little bit of a picture on why this is
an emerging health area of interest in the US population. More than a quarter of
all Americans have more than one chronic condition, so at least two. And if
you look at the older population two out of three older Americans have more than
one chronic condition. And why this is important is that although it’s pretty
common among the population, that population uses a disproportionately
large share of healthcare expenditures in the United States. So currently this
group accounts for an estimated 66 percent of our healthcare costs. And
so providing efficient and coordinated care to patients with multiple chronic
conditions is of utmost importance. AHRQ, the Agency for Healthcare
Research and Quality, recognized this and put some money into funding both
research projects and also an infrastructure project, that I’ll tell
you about, to make… to really facilitate research of this population in this area.
And it’s also true that as our population ages this is going to become
an even bigger issue. So one of the things that AHRQ recognized was that it’s
particularly difficult to access data to do the kind of research on multiple
chronic conditions. A lot of times researchers are interested in
administrative data from, for example, CMS which are notoriously difficult to
access. One of the other important data sources is electronic medical records,
disease registry data is also important, as are the survey data sets that you’ve
been hearing a lot about from ICPSR today. So these these kinds of data were
one of the things that we were targeted to work with. So AHRQ funded some
exploratory grants in 2008 and some additional exploratory grants in 2010 as
well as 13 infrastructure grants around the country that were tasked with
building data infrastructure in this area. And we were part of the Learning
Network and Technical Assistance Center that helps those infrastructure grants
develop their databases. So while those databases have now been constructed and
launched across the network, some of them… they’re all findable from a
data dissemination website that we manage here at ICPSR and that’s a
screenshot of that website. What you’ll find if you come to the website are a
few different things, one is we’ve culled together all the ICPSR collections that
might be of interest to researchers in this area, and so those are found there.
And then also you’ll get access to the data that are available from the AHRQ MCC
research network that I just described to you, the infrastructure grants that
actually built those new databases. And they’re either directly available from
ICPSR, you can download them or there are pointers to where the data are hosted if
the researcher opted for another sort of point of delivery. The final thing
that’s there, that we’re really excited about, is a small library but hopefully
growing library of programming code that’s useful for researchers who are
constructing variables of common interest. So for example, if you want to
construct the Charleston Co-morbidity Index we have SAS and Stata
programming code available for you so that you can, just sort of, pop that into
your program and save yourself some time. So those are the data and data related
resources that we’re hoping help research in this area. [John] Thank you Amy. I want
to join my colleagues and welcome you to this webinar. My name is John Garcia. I’m
the Director of the Resource Center for Minority Data. And provided in a very
brief amount of time, give you some sense about developments in our archive that
have particular relevance to persons interested in health-related research. So
that what we, you’ll see is that I’ve put a picture of myself and the totality of
our staff. I’m the person on the left, David Thomas is in the center, and Abay
Israel is the other staff member. So it’s a collective effort and it also
represents a collective resource to contact us in terms are providing you
with some assistance whether it be searching for data,
setups, user support type of questions. So basically as Peter Granda
made reference, we are a topical archive but we’re more in the membership model.
That is, we are part of the ICPSR membership model as opposed to a
sponsored workshop. One consequence is that access to our data is largely a
function of a member at ICPSR although some of our collections are open to
non-members without any particular additional hurdles to deal with. Very
quickly, ICPSR was an initiative of the governing council of ICPSR. And what I list
very briefly is our primary mission, that is to provide educators, researchers, and
students with data resources to use in analysis dealing with racial and ethnic
minority populations in the U.S. We’re now exploring some international data to
look at race, ethnicity but our primary focus is the U.S. context. We’re also
trying to generate good science by promoting data sharing. Much of our
efforts are trying to identify, as a number of the other archives do, studies that are of
relevance/importance to the research community. So once identified, we try to
encourage, persuade, coerce, or otherwise… researchers to share their data with us to
make it available. The other thing we do in trying to be an interactive member of
the research communities is that we participate in workshops, we participate
in training sessions, webinars. Again we feel that we’re… we see ourselves as a
partner in this whole venture and so that it’s important, an example, Peter
Granda made reference to the Health Disparity workshops that were funded by
the Robert Wood Johnson Foundation. We partner with HMCA to organize those
workshops and that’s another example of bridging our interests with other
elements of ICPSR. One thing we have been doing of late is acquiring more
research data sets that focus specifically on the health area. Now
I’m going to highlight a few of those in the next three or four slides. Some
recent additions is the Latino MSM. which stands for men having sex with men,
Community Involvement survey. What you’ll see also, in paren, not only the title of the
study but also the study number. So you can search our archives by either
keywords, specific study name, or our study number. The Social Justice
Sexuality Project of 2010 is both a US study, also including residents of
the Island of Puerto Rico, and you’ve got the study name. We’ve got a few more slides
that give you a little more detail. And BRFSS, BRFSS is actually available
through the CDC website. One of the advantages of accessing ICPSR data is
that we do a number of enhancements to the data that’s not available in
other other agencies. For instance, there’s a metadata page, provides more
detailed information about the study, the design. You can search variables through
our search engine, there is a related literature function so you can look at
what products have been generated by other researchers on the range of
topics. So it, part of reason we did BRFSS 2003 is in our workshop one of
our instructors was using that data set to illustrate matters of cultural
factors. This particular year, administration has non-English versions of the same
instrument. So it’s a way of which researchers compare how language of
interview effects responses in health status. So we are now in the process of
also processing BRFSS 2009 and 2011. So that’s, again that’s, we found the utility of
doing that. The MSM, Latino MSM study was a study they include individuals both in
the city of Chicago… metro Chicago, metro San Francisco. Key demographic
variables are ethic identification, sexual identification. There’s some geographic
data available which is in a restricted format in which my colleagues have
talked about the nature of restricted data and sensitivity. But again you want
to look at that population and particularly relation to HIV issues this
is a very good study to pursue and it’s very current in terms of its being
conducted. The Social Justice Sexuality Project documents the
experiences of LGBT populations of color. Again this represents our focus
on minority populations that there are other studies that do not include
substantial numbers of respondents of color so this gives you some comparative
capabilities the other studies do not allow you. All 50 states, metro DC, and
Puerto Rico, you get variation by geographic location, rural versus
suburban, large urban areas. Again there’s enough information to look at these
types of issues of sexuality in different populations. BRFSS is a state
based survey and it really ranges from anywhere from 20 to 26 states
participate. It’s a common instrument, it gives you information on health risk
behaviors, health care practices, health care access. It combines also our
mortality morbidity statistics. So [unintellible] allows you to look at both individual
health status but also policy areas that impact these health status. So again
BRFSS is available through CDC but our processing, I think, enhances the use and
user friendliness of the versions that we create out of our
archive. We’ve had a partnership with the Fenway Institute out of Boston
University which has a research arm that focus on issues of health disparities on
under-served populations. And their focus primarily is on LGBT populations. So
we’re now in the process of releasing some studies that they’ve completed and
we have, I think, three or four studies that are in our queue that as soon as we
release them we’ll make announcements to that. And so again the PRISM project
looks at all the studies that they have done relative to these populations
in health status, health behavior. Again for individuals in this area of
interest this is a very substantial resource and a very good partner in
terms of standing in this area. We said I wanted to be brief, putting the last
slide to… here’s who to contact names and you have pictures in the earlier
slide, names and emails on which you can contact us. Our website, if you go to
the main homepage of ICPSR, scroll down to the bottom, you’ll see logos for all the
archives. Click on the RCMD logo and that will
take you to our web page. So I’ll turn it over to our last participant or last
presenter. [Mary] Hello my name is Mary McEniry. I’m a research scientist, a
demographer, as most of the people actually around the table actually are, and
Director of the Data Sharing for Demographic Research project at ICPSR. This is our web page if you would go out
to look at it. And at the end of my presentation I’ll give you the link to
it. We’re funded, completely funded by NICHD, that’s up in the upper right-hand
corner, and it’s the Population Dynamics branch of NICHD. We’re mostly focused on
children and family but if you were to go out and search our holdings you’ll
find we have a really very nice collection of studies. And they
include children and family but they also include other types of topics.
At the bottom of the web page you see some of the partners that we’ve had in
the past and current including we worked with population centers from Johns
Hopkins, from Minnesota, from Michigan, from the Carolina Populations over at UNC.
And we also worked with with Rand. If I had to share with you a vision of
this archive, this is a topical archive, it would be a valued and trusted place to
go for data archiving and preservation for the fields of democracy and
population science. And also to provide a supporting role in the vision of NICHD.
And the vision of NICHD is, this is almost a direct quote, of what they
say is understanding how the forces that shape populations can
influence health. And having a very ambitious goal of within the next 10
years identifying environmental and genetic factors that mediate health. I’m
going to show you the top 5 downloaded studies with health relevance that would
be of interest to the audience. The first one that by far,
is far dominant across many of the studies even within ICPSR, is the
National Longitudinal Study of Adolescent Health coming from University of North
Carolina Chapel Hill. Kathy Harris is the PI. It’s a longitudinal
national representative sample of over 20,000 adolescents in grades 7
through 12 who were interviewed during 1994-1995 school year and they now have
four waves of data. They also have biomarkers. It’s a really rich data in
terms of its breadth. And, I think the plan for it is that we’re
going to continue looking at these people, they’re in the early 30s now, I’m
going to continue looking at them too until James McNally takes them over
in his archive of aging. So it combines data on respondent’s social, economic,
psychological, and physical well-being with contextual data on family,
neighborhood, school. And again people from all different types of disciplines have used these data. Over 10,000 users of the data and over 4,000
publications have come from this study. So it’s very impressive. The second
downloaded study, this is in order of top download studies, is the India Human
Development Survey. Which is an interesting survey of households,
about 42,000 across India, a variety of topics are covered including health,
education, employment. You can see their economic status, marriage, fertility,
gender relations, and social capital. We have been very active in developing
ties with India. In particular with Peter has gone over for a couple visits and our
Director, so we’re very interested in the relationships we have with
India. The third study is the Welfare, Children, and Families: A Three-City Study.
The three cities are Boston, San Antonio, and Chicago. PIs are coming from UT-
Austin, and University of Chicago, and Johns Hopkins. It’s a sample of
households with children and low-income neighborhoods. And they were trying to
evaluate how the health and development of
children were affected by the welfare reforms of the 1990s. The fourth one has
to do with immigration. We have several studies with immigration. This is one of
our most top downloaded studies. PIs, again are coming from UC-Irving and
UCLA, investigating an ability among young adults aged 20 to 39, children of
immigrants in Los Angeles via telephone interview. So we have about 5000
respondents and again a variety of information- self-reported health is in
there, extensive data and social cultural orientation, etc. The fifth downloaded… top
download study is the National Couples Survey, 2005-2006 coming from the
Battelle Centers for Public Health Research and Evaluation. It was a survey
of 413 married couples, and about 261 cohabiting couples, 451 dating. A total of
a little over 2,000 individuals total. And they attained data on the
contraceptive decision-making, birth desires, and disease prevention choices
of both partners. So I want to mention a couple other more recent studies that
have health relevance. One is the Research on Early Life and Aging Trends and
Effects (RELATE) and that very much has to do with aging but it also has to do with
early life conditions. It is trying to understand the association between early
life conditions in older adult health. It has combined existing data sets on aging,
on health, and now has over 147,000 older adults from 19 countries. It’s all into a single, harmonized cross-national data set. And
so there’s data from Latin America, Asia, Africa, and then we have the US, and we
have England, and we have the Netherlands. So we’ve touched on most parts of the
world. It includes basic demographic and geographic variables along with a number
of current and retrospective health variables. And again exploring on how
early life conditions affect health in later adult life, in particular adult
heart disease, obesity, and diabetes. The other study that I want to
mention is the Supporting Healthy Marriage Study that we’re in the
process of releasing and we expect to have it on release sometime in the late
spring of 2014. It’s coming out of MDRC for those of you who would like to know what that is. That’s a non-profit [off mic inaudible voice] [Mary] Yes, right absolutely for those people who have
been around for a long time that’s from the 1974 and it’s a nonprofit
organization, they do great work. And this is their first large-scale, multi-site,
multi-year test of marriage education programs for low-income married couples
and they collected a lot lot lots of information on over 12,000 husbands and
wives. And they also have children, information on children. It did some
limited interviewing of children and they also have some observational data
on children and it goes from the period of 2003 to 2013. So it’s a really very, it
will be a very rich data set to look at. Focus is on family relationships,
mental health, substance abuse, and its funded by the Administration for Children
and Families within the US Department of Health and Human Services. Here’s our
website contact if you… There’s two ways to get to us. John told
you one way and that was to go out to the ICPSR website, and if you scroll down
on the front page there on the bottom left you’ll see the logos for all the
topical archives. And DSDR is right there on the top, on the left hand side.
And then I’ve also given you the direct link to DSDR. So you’re welcome to go
out and look at it and there is a place to contact us on our
website and you’re welcome and we would really love to have you contact and ask
a lot of questions. And we’d love to work with you, So thank you. [Peter] Okay, speaking of questions. We hope
that you’ve submitted a number of them. So let’s take a look. Yes, we’ve got a few.
First question is, “I’m interested in resources that are military specific or
include veterans and what variables these databases might include?” Anybody
want to respond to that one? Well I don’t think… we obviously don’t have a
topical archive on veterans data but we’ve been thinking about doing that for
some time now if we can get some funding to do it. One of the things that’s
happening at the University of Michigan though at a project that got started a
couple of years ago to collect data from present-day people in the Army that have
to do with their mental health and on suicide attempts. And this data has been
collected over the last couple of years and we’re hoping to make some of it
available in the next year or so as these surveys conclude. But I think if
you search through our website and search through our variables database
you might be able to find some information that do deal with veterans
in particular. And I think we do have a couple of datasets from the Veterans Administration as well. [Amy] This is Amy Pienta. Please feel free to contact me, to the user who asked this question. I have just… I recently compiled a list
of the studies that we have that have to do with veterans. So if it’s a list that you’re interested in, shoot me an email
and I’m happy to share that with you. [Peter] Okay the next question is, “Does the SWAN
data sets include the additional site specific subsets as in Chicago?” [James] Yes, yeah
we have all the slides and they’re available through the data
set. In terms of the next question… It’s “I’m a graduate researcher from the
University in Canada. I’m researching rural areas in male caregivers of
spouses with dementia. Are there specific data in either North America or Canadian
that examine demented elderly in rural areas?” That’s a tough one. We do have
the REACH data which is, I believe, two to three waves of caregiver data on people
taking care of elderly with dementia. But the rural component, I don’t know how big it
is. And that’s about the only data set… you could also look possibly at
some of the bereavement data sets like the CLOCK data set out of the Americans’
Changing Lives survey, there may be some information there. Generally
information on caregivers of dementia, you’re going to find mostly in the
qualitative literature much more so than the quantitative. REACH is a very good
study, I would recommend looking at it if for no other reason that it’s a very
well done study of the impact of caregiving on people who are providing
care for elders going through cognitive impairment. [Peter] The next question is, “Is there
support for linking specialized data sets to publicly available location-based data such as socio-economic demographic characteristics of census
tracts? If possible, are special permissions or other procedural
restrictions required?” We do have some data sets that you can link. We have a
very good county characteristics file whereby in the United States you’d be
able to link data that you collected at the county level and get a lot of
different measures of what that county’s population and socio-demographic
characteristics are. I think getting below that level, particularly to the level of census tracts, would be much more
difficult because of confidentiality concerns. But we don’t have any data sets
at ICPSR that would be able to just link with census tracts though they’re
probably some out there. Anybody else? [off mic voices] Okay, the next question is, “How would approved
users go about accessing the Virtual Data Enclave?” A good question from Dan Sang in Irvine. So I’ll turn that over to John Marcotte. [John] Actually you don’t
apply for access to the Virtual Enclave. What you do is you apply for access to
certain data sets and data are distributed in different ways. So if the
data set is distributed through the Virtual Data Enclave then you would be
given access to it. But it’s actually… the request is to get access to a particular
data set. So some data are distributed through the VDE and some or not. If you are
approved as a user of the VDE you have to be given appropriate credentials
and then you need to download the VMware client software to be able to access it. But
I want to stress that you don’t apply for access to the VDE per se,
you apply for access to data and data are then distributed in an appropriate way.
[Peter] Okay we’ve got a couple more questions. The next one is, “I’m
interested in family caregivers of people with severe mental illness and
wondering if there’s any specific data set including caregivers of people with
severe mental illness?” Anybody? I don’t think we know of any particularly
offhand. We have the Collaborative Psychiatric Epidemiology studies which are… have a lot of information about mental illness
in them with three major surveys being part of them. And that you’ll find on ICPSR’s web page to look at those data, but I
don’t think they have specific information about family caregivers. [John Garcia] I’m
not necessarily saying that’s not the case but what I might do is it illustrates
the utility of our infrastructure because the CPES study that Peter made
reference to, focus on mental health, using our variable search engine and
other, that is explore the data, use variable search engine. keywords to look
at caregivers, mental health. You might find there might be enough cases that you can do
some analysis but that just reinforces exploration of what we have in a way
which you can get more detailed information about what is in a
perspective data set that might be of use. [Peter] So we’ve got one final question
and it’s just about five o’clock but if you have, anybody else has another
question we will be happy to answer it. This one is, “I was wondering whether there’s
an archive of area resource file at ICPSR?” I think you’re referring to the
Area Resource Files data sets in general and many years ago we did have them at
ICPSR but I think we were not allowed to distribute them after that
period some time ago. So I think you just have to try to get them from the source
itself. Does anybody remember anything else about the resource files? Okay well it’s,
we don’t see any other questions but we want to thank all of you who spent this
hour listening to health research data at ICPSR and we hope you’ll let your
faculty and students and researchers know about the data and please send us
any questions that you have. All of the information we provided to you will be
available and we’ll have these presentations up and of course all of
our contact information is on the ICPSR website. So thanks again for joining. Bye

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