Subcommittee on Science Technology and Space of the Senate Committee
on Commerce, Science, and Transportation
Hearing on E-Health and Technology: Empowering Consumers in a Simpler,
More Cost-Effective Health Care System
Testimony of Sherrilynne S. Fuller
Head, Division of Biomedical Informatics, Professor, Department of Medical
Education, University of Washington School of Medicine
July 23, 2001
Good afternoon. I want to thank Chairman Wyden, Ranking Member Allen,
and the members of the Subcommittee for the opportunity to be here today.
Improving the quality and cost-effectiveness of health care for our Nation’s
more than 270 million citizens is one of the great challenges of our time,
so I am pleased to be able to join in this discussion.
Background
I am here as a representative of the President’s Information Technology
Advisory Committee, or PITAC, and the co-chair of PITAC’s Panel on
Transforming Health Care. The PITAC is a group of 22 information technology
leaders in industry, research, and academe whose charge is to provide
independent guidance to the President on maintaining U.S. leadership in
high performance computing, networking, and information technology research
and development. In February 1999, PITAC issued "Information Technology
Research: Investing in Our Future," a major report on the status
of information technology research and development. In that report, we
described 10 major areas of our national life – including health
care – in which information technology could have a transforming
impact that will benefit all Americans.
As a followup to that initial report, PITAC established a number of Committee
panels to conduct more targeted analyses of the information technology
barriers and opportunities in specific transformational challenge areas.
To date, PITAC has issued panel reports on "Transforming Access to
Government Through Information Technology" ((September 2000); "Developing
Open Source Software To Advance High End Computing" (October 2000);
and "Digital Libraries: Universal Access to Human Knowledge";
"Using Information Technology To Transform the Way We Learn";
and "Transforming Health Care Through Information Technology"
(all in February 2001). My co-chair on PITAC’s Panel on Transforming
Health Care was Dr. Ted Shortliffe, professor and chair of the Department
of Medical Informatics at the College of Physicians and Surgeons, Columbia
University, who has been particularly interested for several years in
the Federal role in health care information technology. The Panel reviewed
the current literature and consulted widely with Federal and private-sector
experts over the course of a year in developing the findings and recommendations
of our report.
PITAC Transforming Health Care Report
Our panel concluded that information technology offers the potential to
expand access to health care significantly, to improve its quality, to
reduce its costs, and to transform the conduct of biomedical research.
The quality of U.S. health care and medical research are the envy of the
world, but U.S. health care costs as a percentage of gross domestic product
are among the highest in the world and are increasing despite recent changes
in health care organization and financing. Further, a recent report from
the Institute of Medicine (IOM), "To Err is Human," points out
that despite our favorable reputation for especially complex care management,
our health care system is not nearly as safe as it could be. The report
argues that significant improvements in care would be possible if modern
clinical information systems were widely implemented and a sound national
health information infrastructure were in place.
Because the focus of this hearing is how information technology can empower
health care consumers, I want to read you part of our Panel’s patient-
and consumer-centric vision of better health care enabled by information
technology:
"Telemedicine applications are commonplace. Specialists use videoconferencing
and telesensing methods to interview and even to examine patients who
may be hundreds of miles away. … Patients are empowered in making
decisions about their own care through new models of interaction with
their physicians and ever-increasing access to biomedical information
via digital medical libraries and the Internet. New communications and
monitoring technologies support treatment of patients comfortably from
their own homes."
The health sector will experience unprecedented change as it begins to
take advantage of information technologies to increase productivity and
to improve the quality of care in the ways the PITAC panel envisions.
While new technologies can provide great opportunities for advances, key
challenges exist to realizing the potential benefits to Americans' health
and health care. The Panel made the following findings about these challenges:
1. The U.S. lacks a broadly disseminated and accepted national vision
for information technology in health care.
Health care organizations are not well prepared to adopt information technology
and applications effectively. Health care is largely a decentralized industry
populated by diverse organizations with different motives, resources,
and incentives. Fiscal constraints hinder the industry's ability to make
major investments in information infrastructure and applications unless
these investments can be shown to lead to significant and low-risk returns.
Provider organizations lack information about the efficiency of information
technology solutions in terms of both cost and quality, making it difficult
for them to make decisions about information technology investments. We
now have sufficient evidence to state that computer-based patient records
can substantially improve patient care, outcomes, and costs. Yet to date
we do not have the national commitment to assure that Americans will reap
the benefits of this technology.
2. Critical, long-term research, technology, and policy issues need
to be addressed if we are to realize the potential of information technology
to improve the practice of health care.
While significant advances in information technology have been achieved,
many hard problems remain. For example, user interfaces that are easier
to use and more easily integrated into the ergonomic patterns of health
care can catalyze greater acceptance and use of innovative computer-based
tools in medicine. Robotics and remote visualization methods supported
by high-reliability and low-latency communications are needed to enable
applications such as telepresence surgery. Reliability of systems and
software is critical for many health care applications. Human life may
be at risk if information sent to medical monitoring or dosage equipment
is corrupted or degraded, or if electronic medical records cannot be accessed
in a timely, reliable way.
Knowledge repositories are also an important research topic, including
techniques for integrating data from multiple sources. Stronger forms
of authentication are needed, both for persons accessing data and for
assuring the integrity of the information. Methods are needed to protect
patients' privacy while allowing valuable medical research and necessary
reimbursement tasks to be performed. Better access-control methods would
make it possible to partition and isolate the data elements as needed
to protect patient privacy. Improvements in computational capability are
therefore essential, including faster processing and more networked resources
to meet the increased demands of modeling complex systems and performing
information retrieval, data analysis, and automated inferencing.
From a policy perspective, perhaps the most significant problem is the
lack of reimbursement for a range of applications that have demonstrated
value, e.g., telemedicine, patient-provider interactions over the Internet,
efforts to reduce medical errors, and initiatives that link a patient's
data across provider organizations. We have sufficient evidence, for example,
that computer-based patient records can substantially improve patient
care, outcomes, and costs. But many provider organizations lack information
about the efficiency of IT solutions in terms of both cost and quality,
so it is difficult for them to make appropriate decisions about IT investments.
(For a history and discussion of the health care community’s role
in networking, see Edward H. Shortliffe’s article "Networking
Health: Learning From Others, Taking the Lead," Health Affairs, November/December
2000, attached to this testimony.)
Further complicating matters is the fact that health care providers are
currently licensed by individual states and are generally prohibited from
providing care across state lines. This becomes a clear issue when a patient
is in one state but the physician at the other end of a telemedicine link
is in another. Liability claims are also handled at the state level, with
considerable variation among states.
3. The introduction of integrated decision-support systems that can
proactively foster best practices requires enhanced information technology
methods and tools.
Decision-support tools can provide critical links between a current patient's
condition and previous clinical studies. Existing systems largely focus
on detecting errors at the source, through such methods as range checking,
alerts, and reminders, or post-hoc quality monitoring and review. While
these types of systems are vital components for improving quality of care,
important information is often unavailable or inaccessible because it
is spread across multiple information systems and/or organizations with
differing systems. This can result in poor coordination of care and increased
illness and mortality.
Scientists are generating enormous amounts of raw data from clinical trials
as well as bench research. However, making sense of the raw data in the
context of previously published research requires sophisticated information
retrieval and management approaches not yet invented. For example, the
recent death of a healthy volunteer in an asthma clinical trial can be
traced to inadequate review of the historical literature regarding known,
fatal reactions to a drug. In spite of the impressive National Library
of Medicine databases, vital information is still not "at our fingertips."
(See July 17, 2001, article from The Baltimore Sun attached to this testimony.)
Two examples of other technologies that could make a difference in patient
care: automated reminders to clinicians and patients regarding treatments,
followup visits, and the like; and Rapid Alerts to clinicians and patients
regarding abnormal lab findings. However, software that will deliver the
power and functionality required for such time-critical communications
is lacking in most hospitals today.
As a new report from the Robert Wood Johnson Foundation points out, "eHealth
interventions have been shown to enhance social support and cognitive
functioning; enhance learning efficiency; improve clinical decision-making
and practice; reduce health services utilization; and lower health care
costs among certain groups." However, the report goes on to note
that "most assessments of eHealth interventions have been limited
to small groups that may not be representative of the parent population,
have not been randomized control trials, had limited follow-up periods
or only assessed proprietary interventions that may or may not be replicable.…
eHealth developers do not routinely conduct evaluations, especially post-market
assessment for effectiveness. And when commercial companies and other
private sector organizations DO conduct evaluations, the results are often
not publicly available." (See Eng, T.R., "The eHealth Landscape:
A Terrain Map of Emerging Information and Communication Technologies in
Health and Health Care," The Robert Wood Johnson Foundation, 2001.
Available at: www.rwjf.org.)
We cannot wait for industry to deliver solutions because we do not yet
know all of the questions. What we need is a national commitment to do
the research it will take to develop an array of 21st century patient-centric
applications of information technology. The challenge of going beyond
current methods to ones that proactively foster best practices will require
a whole new generation of advanced technologies based on efforts in the
following areas:
- Expanding the range and granularity of routinely captured data
- Standardizing terminology
- Developing robust techniques for incorporating new data types into
existing clinical data repositories, e.g., images and patient genotype
- Organizing and collecting large-scale databases to determine best
practices
- Developing guidelines based on such evidence
- Implementing guidelines so that they are usable effectively at the
point of care, including embedded decision support that is continually
updated as new evidence accumulates
- Reducing the cost and difficulty of integrating applications that
reside on heterogeneous technologies
4. Achieving the potential of information technology to improve health
care will be constrained until we develop a larger cadre of researchers
and practitioners who operate at the nexus of health and computing/ communications.
In part, the missing national vision of information technology’s key
role in the U.S. health care system is due to a lack of critical investment
by the biomedical community in computer infrastructure and enabling technologies.
This issue becomes increasingly difficult to solve because the number of
individuals who understand both the health care milieu and information technology
is remarkably small. Yet, if we are to improve health care quality, increasing
the number of trained professionals with biomedical information technology
expertise is a critical need.
5. The biomedical community, including the Federal research agencies,
has tended to rely on information technology innovations that are produced
by investments in other parts of Government.
Although the quality of U.S. health care is increasingly dependent on the
effective use of new and emerging information technologies, Federal health
agencies have played a limited role in supporting research and development
in computer science. Unfortunately, the health care and biomedical research
communities have generally viewed information technology as a tool to enable
health care applications and support biomedical research, rather than a
critical research field. The Department of Health and Human Services (DHHS)
has heavily leveraged information technology research and development investments
made by other Federal agencies such as the Defense Advanced Research Projects
Agency (DARPA), the Department of Energy (DOE), the National Aeronautics
and Space Administration (NASA), and the National Science Foundation (NSF).
While DARPA, DOE, NASA, NSF, and other Federal agencies consistently make
significant investments in fundamental information technology research and
development, their primary mission is not health care and therefore their
priorities do not necessarily match the critical needs of health care research
and education.
DHHS has failed to make vital investments in fundamental information technology
research and development and, as a result, health care lags behind other
sectors. If DHHS does not begin to make substantial investments in information
technology research and development, two serious problems will arise. First,
the pace at which biomedicine benefits from information technology research
will be adversely affected. Second, the needs of the biomedical community
will not be reflected in the priorities of the other Federal agencies unless
the biomedical community itself is involved in information technology research.
Similarly, the biomedical research agencies must collaborate on an equal
footing with the other Federal research agencies that have dominated information
technology research in the past.
6. The role and management of information technology in the Department
of Health and Human Services has several limitations, which must be addressed
if the health care community is to benefit from the promise of the information
age.
DHHS does not have a clear, strategic vision of the benefit that the department
and all of its agencies could receive from information technology research
and use of information technology tools. It is evident that the decentralized
management approach of DHHS has adversely affected both the development
of a coherent information technology vision and the influence of departmental
activities regarding information technology and its role in health care
and biomedical research. It is important to change this practice and ensure
that DHHS has the necessary leadership and budget and a coordinated information
technology effort across all its agencies. In our discussions with DHHS
agencies, it became clear that they do not have a mandate or budget to support
information technology research, even though it is fundamental to their
mission.
Although the Administration and Congress have placed a high level of confidence
in information technology's benefit to this country, DHHS is not perceived
as a significant player in Federal information technology research or policy
development. It is clear, however, that state-of-the-art research advances
in any field require state-of-the-art investments aimed at solving problems,
developing the technology, and building the right infrastructure.
PITAC’s Recommendations
Over all, our report argues that the Nation must invest in research and
development focused on realizing the potential of information technology
to support 21st century patient-centered health care, just as we are focusing
on the potential of research findings in microbiology to help treat and
cure human diseases. We believe that we cannot get where we need to go within
the current patchwork, piecemeal implementations of technologies, most of
which were not designed for the life-and-death issues of patient care or
the scale and demands of health information systems.
1. The Federal government should establish pilot projects, Enabling Technology
centers, and large-scale research programs to extend practical uses of information
technology to patient care, health care systems, and biomedical research.
The Enabling Technology centers could build on the very good program models
of the National Library of Medicine’s integrated academic systems and
telemedicine grant programs, which have supported the development of applications
linking distributed organizations via networks and prototyping technologies
for specific health care uses. (For examples of NLM advanced networking
applications projects, see list attached to this testimony.) These centers
would serve as a resource for developing the dual-trained workforce in biomedical
information technologies that we believe is critical for the future, and
would also bring together researchers, clinicians, patients, providers,
industry, and government stakeholders to solve health care-specific problems.
With regard to large-scale research projects, the Nation is making significant
investments in disease-oriented studies. But there is very little funding
to support large scale, long-term studies of information technology interventions
with large populations – across disease types. DHHS’s Agency for
Healthcare Research Quality and the National Library of Medicine of the
National Institutes of Health have funded most of the health IT research
to date. And NLM has also led in building medicine’s vital resource
databases, including the PubMED and genome databases. However, the funding
is inadequate to meet the depth and breadth of the problems. For example:
Use of provider/patient email – Is it clinically effective? Cost effective?
Does it reduce patient visits? Improve patient satisfaction?
Telemedicine for consultations – Studies have repeatedly shown high
levels of satisfaction with this approach among rural patients, their primary
care providers and specialists. In spite of this apparently positive response,
the approach not yet in general use. Many limiting factors have been identified,
including cost of rural connectivity and regulatory issues. However, adequate
research funding of studies over longer periods of time could provide the
answers needed to solve these problems.
Remote-care applications that integrate sensor technologies and/or remote
instrumentation to monitor patients – For example, a significant number
of people who reside in nursing homes are there more for health "security"
reasons than for heath care "needs." Many residents in extended-care
facilities could be cared for at home at significantly reduced costs if
the appropriate telemedicine tools were available to enable remote monitoring.
Additionally, many of the home-health visits conducted today are based on
the need to observe or monitor a patient's status, a function that could
be accomplished through interactive video systems coupled with the appropriate
instrumentation and a simple-to-use interface.
Using the Web to obtain health information – Increasingly, patients
(and providers) seek medical information on the Web. But they encounter
a bewildering quantity of information of variable quality. We need to study
the types of questions patients are seeking answers to and where are they
looking, and develop strategies for helping them find answers. A particular
problem based on my own work with Native American tribes is that much of
the available health information on the Web does not adequately address
the needs of minority populations. (See "Health Information on the
Internet: Accessibility, Quality, and Readability in English and Spanish,"
Berland, JAMA, Volume 285(20), 23/30 May 2001. This empirical study found
issues in both health content and search engine efficiency.)
Federal Leadership
The following recommendations of PITAC’s report flow from the Health
Care Panel’s view that the Federal government’s key health-care
agency, DHHS, must develop a much more active and visible leadership role
in articulating, developing, and modeling information technology methods
and systems for improving U.S. health care. We also urge that NIH and other
Federal science agencies collaborate on an advanced infrastructure for the
biomedical research community. And we ask the Congress to enhance existing
rules on information privacy. These proposals are needed to spearhead the
broad changes we are describing across the decentralized and diversified
landscape of the Nation’s health care sector.
2. NIH, in close collaboration with NSF, DARPA, and DOE, should design
and deploy a scalable national computing and information infrastructure
to support the biomedical research community. This infrastructure should
include an aggressive biomedical computing capability similar to that of
the Department of Energy National Nuclear Security Administration's (DOE/NNSA)
Accelerated Strategic Computing program.
Computational biology and other biomedical problems require the fastest
computing cycles and information processing capabilities achievable today.
And as we seek to improve our knowledge of the human body, these computing
requirements will grow exponentially. There should be a biomedical equivalent
of the DOE/NNSA program to provide multi-teraops/teraflops computing capability
to high-end users and to fund the development of improved algorithms and
enabling technologies for terascale systems. Facilities with mid-level computers
also should be made available for researchers to develop and test software
before moving to large systems. These mid-level systems can also be used
for developing new algorithms and applications for biological problems.
To enable this distributed, scalable computing environment, investments
are needed in software to support grid technologies to permit dynamic allocation
of computing and information processing capability across geographically
distributed locations as needed. Long-term information storage and management
of biomedical databases are also important computing infrastructure requirements.
DHHS should work with the community to decide which databases are to be
maintained, for how long, and by whom. DHHS also should provide the necessary
funding to support the infrastructure needed to maintain the databases over
the long term.
3. Congress should enhance existing privacy rules by enacting legislation
that assures sound practices for managing personally identifiable health
information of any kind.
Protections are needed that deal with unauthorized access and disclosure
and that allow for appropriate access and amendment by patients. Governing
the stewardship of and access to medical information is an important issue.
Legislation should identify the national standards by which information
can be shared, should permit electronic authentication of information, and
should include sanctions/penalties for violations. Despite the recent announcement
of privacy regulations in response to the Health Insurance Portability and
Accountability Act of 1996 (HIPAA), uncertainties can be dealt with convincingly
only by a clear legislative mandate.
4. Establish programs to increase the pool of biomedical research and health
care professionals with training at the intersection of health and information
technology.
The Panel applauds the efforts of the NIH 's Biomedical Information Science
and Technology Initiative to establish National Programs of Excellence in
Biomedical Computing to support learning at the interfaces among biology,
mathematics, and computation. Such programs can play a significant role
in educating biomedical-computation researchers. DHHS should identify and
nurture similar programs to provide training at the intersection of information
technology and health care professionals. For new applications of information
technology to health care to be envisioned, developed, and implemented,
it will be necessary to build teams of health care application experts,
biomedical researchers, and computer scientists. Such teams can build bridges
among near-, mid-, and long-term R&D to help ensure rapid adoption of
new technologies in the health care system. DHHS should explore other educational
opportunities, such as expanding health informatics training programs and
curricula within the schools of health professions and computer science
departments.
5. DHHS should outline its vision for using information technology to
improve health care in this country and subsequently devote the necessary
resources to do the basic information technology research critical to accomplishing
these goals in the long term.
DHHS should develop an agenda to remove the policy barriers that currently
inhibit the use of information technology in support of health care. This
might, for example, include the development of an expanded agenda at the
centers for Medicare and Medicaid Services (CMS) (formerly the Health Care
Financing Administration) to evaluate the impact of such technologies on
care quality and costs and to provide reimbursement (or other incentives)
should the impact prove to be socially valuable.
The Department should also establish an aggressive research program in computer
science that is motivated by health needs. It is important that the research
program address long-term needs, rather than the application of existing
information technology to biomedical problems. Some entities within DHHS,
most notably NLM but also other elements of NIH and AHRQ, have invested
in research in applications of computing and communications technologies.
But much of this work has had short-term goals and DHHS itself has not made
information technology research and development in health- related activities
a priority. Financially stressed health care organizations will not increase
their commitment to the use of information technology without strong leadership
and demonstrations of value. (For examples of the types of research and
development DHHS might encourage, see pages 14-15 of "Transforming
Health Care Through Information Technology.")
6. DHHS should appoint a senior information technology leader to provide
strategic leadership across DHHS and focus on the importance of information
technology in addressing pressing problems in health care.
Information technology is of critical importance to the Nation and can be
instrumental in providing the best possible health care to all of our citizens.
At this time, information technology research and use are not viewed within
DHHS as strategically as is necessary. We therefore recommend that DHHS
create a high-level position designed to provide the necessary vision for
the agency in its efforts to incorporate information technology in its agency
mission and strategy. While we cannot best judge how this should be accomplished,
we recommend that the position be at least at a level equivalent to the
deputy undersecretary. This person should be an expert who operates at the
nexus of health and computing/ communications. In addition, a budget should
be provided to facilitate this person's coordinating and educational activities.
Conclusion
PITAC strongly believes that information technologies hold the potential
to dramatically improve the U.S. health care system. The barriers are diverse,
ranging as they do from basic technology questions that require fundamental
research, to human, organizational, and social factors that complicate the
application of technology in a complex setting such as health care. But
in almost all such areas, there is a role for the Federal government to
play. Our health care report has outlined those roles and we hope that you
and your colleagues will find our suggestions engaging and persuasive. The
Nation has much to gain if IT is more effectively applied to prevent disease,
to reduce errors and expense, and to improve the overall quality of health
care for our citizens.
The PITAC will be happy to provide the subcommittee with additional information
and to work with members pursuing these significant aspects of U.S. health
care quality.
Thank you.
|
