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Building Trusted Information-Sharing Environments for National Security and Health Care
1
Building Trusted Information-Sharing Environments for National
Security and Health Care
Key Note Speech
Web-Enabled Government: Transforming the Business of Government
The e-Gov Institute
June 1
st
, 2005
By Zoë Baird
President, Markle Foundation
INTRODUCTION
Good afternoon. It is a pleasure to be here today with colleagues both in the government
and from other sectors to discuss how we can best transform the business of government
through sharing information and using information technology (IT). I thank the e-Gov
institute for the privilege of participating in todays meeting.
There are few matters more important to the future of our government and
American society than the challenge we are grappling with here today. Advances in
information technology continue to promise a future with possibilities that go far beyond
the revolutionary change we have already witnessed in business, finance, and consumer
choice. In fact, Im sure that all of us here today share the belief that technology, woven
into the fabric of institutions serving the public, can re-engineer how information is used
to meet critical public needs, and empower people to improve their lives. 2
Aware of the transformative potential of IT, the Markle Foundation has worked
for the last few years on the creation of trusted information-sharing environments in both
national security and health care. We have been working with many collaborators from
government and the private sector to achieve two major goals:
o The first goal is to strengthen our nations security while protecting
civil liberties.
o The second goal is to modernize our complex and over-burdened
healthcare system while preserving personal privacy.
These are two of the most critical challenges of our time, in which it is clear that
the benefit of putting the right information in the right hands at the right time is
enormous. In each of these areas, we know that the effective and appropriate use of IT
can literally save lives. We also know that our nations goals in both areas cannot be met
without better use of IT.
At the same time, national security and health care also put into sharp focus a
critical challenge: protecting our established civil liberties and personal privacy as we
seek new ways to transform our lives through information and information technology.
This must be done from the outset, not as an afterthought. Policies and business rules
must be in place at the moment the sharing of sensitive information occurs. Otherwise,
public trust may be undermined and this may weaken our ability to implement the
exchange of information. Clearly, the policies and rules for these efforts must be
developed in a transparent, inclusive, and accountable manner in order to allow for
legitimate outcomes.
In the National Security environment, we created the Task Force on National
Security in the Information Age, a distinguished panel of security experts from five
administrations, as well as experts on technology and civil liberties, which I am 3
privileged to co-chair with Jim Barksdale. In health care, we support and manage
Connecting for Health, a public-private collaborative consisting of an extraordinary
group of government, industry, technology, consumer, and healthcare leaders, which has
championed electronic connectivity in the national health care debate.
I was asked by the organizers of todays e-Gov Conference to reflect on the
challenges in implementing an information-sharing environment. In a few minutes, I will
focus most of my remarks on implementation of the information-sharing environment in
the Intelligence Reform Act.
Yet, before I do so, I am delighted to note that earlier today our Connecting for
Health initiative announced a new and very significant effort, which will undoubtedly
make significant progress toward developing a nation-wide health information exchange
or health information-sharing environment.
LAUNCH OF A PROTOTYPE
Today, Connecting for Health announced that it is launching a prototype for a
nationwide health information exchange.
This effort is one of the first steps toward achieving the transformative vision Im
sure we all share -- enabling patients and authorized physicians anywhere in the U.S. to
share important, even life-saving, personal health information on a completely voluntary
basis in a secure and private manner.
Managed by the Markle Foundation and funded by the Markle Foundation and
one of our partners, the Robert Wood Johnson Foundation, this new initiative will allow
authorized users of three very different health information networks located in California,
Massachusetts, and Indiana to share health information across state lines with each other. 4
These three local communities share a commitment to empowering patients to
take an active part in their health care, increasing the quality of medical care, reducing
costs, protecting personal privacy, and encouraging local autonomy and innovation in
electronic communication. By adopting common technology standards for describing and
sending health information, these efforts will also demonstrate national interoperability
between regional networks.
We are launching this prototype at a unique moment in time. Last year, the
President issued an Executive Order and a Report on Innovation, calling for every
American to have an electronic health record within the next ten years. In addition, HHS
has established the National Health Information Technology Coordinator and is currently
considering how to create a national health information-sharing environment. We believe
that the lessons learned through the Connecting for Health initiative will contribute to
efforts by the government and others to establish a policy and technical framework that
reflects public values.
This new effort will inform government, consumers, and the private sector about
immediate steps to achieve improvements in health care quality and efficiency through
information sharing and information technology.
Its key elements are:
patients and their authorized health professionals jointly make decisions
regarding the sharing of health information;
Information about patients is stored in the electronic files of the health
professionals and institutions responsible for patient care and with the patients
own record, and not in one central national database;
a nationwide health information exchange is created on the Internet, not as a
completely new network; 5
communication among numerous, disparate information networks and diverse
communities is facilitated; and
there is diversity in software and hardware in the system.
It is critical, as we approach information sharing in health care, that we not make the
same mistakes the government made with national security projects like the FBIs Virtual
Case File or DARPAs Total Information Awarenesswhere the policy goals and
constraints were not clearly defined so they could drive the technology development.
MARKLE TASK FORCE
These principles for transforming health care share much in common with the
principles recommended by the Markle Task Force on National Security in the
Information Age for increasing national security, while protecting established civil
liberties. The networked environment we are working to establish would bring together
disparate data to help the government draw a meaningful picture of potential terrorist
threats. At the same, it would assure that established civil liberties are protected. Just as
in health care, we are committed to having our Nations common values shape the
technological solutions we pursue.
In that spirit, the Markle Task Force on National Security recommended the
development of a networked environment, which it has called the SHARE (Systemwide
Homeland Analysis and Response Exchange) Network. This is much more than a
technical architecture that can be built and deployed. This is a combination of people,
processes, policies, and culture, and takes full advantage of advances in information
technology and the best thinking in the private sector about use of information. 6
Information sharing is only a starting point, not an end in itself. The Markle Task
Force encouraged new ways of sharing information so that our government can get the
right information to the right people in a timely way and improve our ability to prevent or
respond to terrorist attacks.
Taken together, the Task Force recommendations are meant to increase the