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Pilot Program
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Health IT and How it Impacts the Quality of Health Care in America |
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Meet the Panel
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Carolyn Clancy, M.D.
Director
AHRQ
Full Bio
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Alan G. Merten, Ph.D.
President
George Mason University
Full Bio
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Alison Rein
Former Assistant Director Food and Health Policy
National Consumers League
Full Bio
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Gregory Bentz, M.D., Ph.D.
Chief Medical Officer
INOVA Loudon Hospital
Full Bio
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Theresa M. Davis, R.N., M.S.N.
Operations Director/Patient Care Director eICU
INOVA Health System
Full Bio
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Gregg Meyer, M.D., M.Sc.
Senior VP for Quality and Patient Safety
Massachusetts General Hospital
Full Bio
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Robert M. Kolodner, M.D.
National Coordinator
Office of the National Coordinator for Health IT
Full Bio
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Dave deBronkart
PatientSite System User
Patient at Boston’s Beth Israel Deaconess Medical Center
Full Bio
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Steven E. Wojcik
Vice President, Public Policy
National Business Group on Health
Full Bio
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Deven McGraw
Chief Operating Officer
National Partnership for Women & Families
Full Bio
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Geoffrey Brown, Ph.D.
Sr. VP/Chief Information Officer IT
INOVA Health System
Full Bio
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Alison Rein
Former Assistant Director Food and Health Policy
National Consumers League
Alison Rein is the former Assistant Director of Food & Health Policy at the
National Consumers League (NCL). Founded in 1899 to bring consumer power to
bear on marketplace and workplace issues, NCL is the nation’s oldest consumer
organization. Ms. Rein designed and coordinated campaigns and other activities
around NCL’s priority issues, including food and drug safety, health education,
risk/benefit communications – all aimed at enhancing consumer access to
reliable, useful and relevant information. Ms. Rein expanded NCL’s involvement
in the emerging national discussion about health information technologies –
recognizing the efficiency and quality gains that could be generated through
appropriate electronic data exchange. She encouraged expanded and meaningful
consumer involvement in local and regional efforts, as well as in the federal
government’s activities supporting design of a Nationwide Health Information
Network.
Prior to joining NCL, Ms. Rein served as a health care consultant to a number
of private and non-profit organizations for which she conducted strategic
evaluations, market studies, and health economics and outcomes research. She
holds a masters degree in public policy analysis from the University of
Rochester.
"There is no question that we need to embrace the use of health information
technologies and electronic information exchange; we live in the 21st century,
but often use 19th century methods to communicate health information. That is
just not smart, nor is it sustainable. What we just saw in that clip though is
a first step; a single medical practice or hospital transitioning from paper to
electronic record keeping. The real patient confidentiality and security
concerns emerge when we start to think about who else that electronic
information goes to. Will medical providers send your records to any other
provider who asks for it? Will patients be able to indicate which portions of
their records they do and do not want shared?
HIPAA provides a very basic level of protection for patients, ensuring that
data transactions between health care providers, insurers, and other “business
associates” have security and privacy measures in place. But there are a couple
major limitations of HIPAA in this new e-health domain: 1) The regulation
stipulates that the “minimum necessary” information should be sent in any
transaction, but this is a really vague term and no one really knows what it
means. As such, institutions often send ALL the information they have in a
patient’s chart – which is most problematic in cases where that info is going
to the person’s insurance company. Once that information is shared – and part
of the record – it is all but impossible to keep it from being shared in other
transactions. One of the other big problems with HIPAA in this context is that
many private companies that do, or would like to participate in the transfer of
your health information are not even covered by HIPAA. Many personal health
record vendors, for example.
I just can’t believe that we have to think of this as an either or proposition.
I would like to believe that Americans could enjoy excellent, well-coordinated
health care AND feel confident that their information is being shared when and
with whom they intend. We have to move the health care delivery system into the
21st century, but we also have a long way to go on the policy side. I think we
would go a long way toward ensuring consumer buy in if we were willing to
tackle some bigger policy issues at the federal level. Right now, we have no
federal law preventing job, insurance or other discrimination based on your
genetic profile. We allow insurance companies to discriminate based on health
status, and we have almost no protections in place for people whose information
is breached or used in any manner inconsistent with the law. In fact, we don’t
even have a federal law requiring that they be notified! In what’s been the
year of the stolen laptop, that’s a real problem.
Right now, people are spending a lot of time trying to solve technical and
financing problems – both of which are important. But the real deal breaker
here is going to be whether people feel confident in the system, and are able
to preserve the essential relationship of privacy that they have with their
trusted health care providers. People should be able to choose if, when, what,
and with whom they want to share their medical information, and this essential
right should not depend on where you live or get care. For this reason, so some
of the foundational policy work needs to come from federal and state
governments, and it is especially important that we look forward to advances in
medicine as we have this conversation. We are rapidly moving into an era of
personalized medicine, where treatments will be determined based on your
genetic profile. Once your genetic information is in your medical record, and
all of your treatment decisions are tied to that, there will be no distinction
between highly sensitive and non-sensitive information." - Alison Rein
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