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June 5, 2003
Connecting For Health Unites Over 100 Organizations To Bring American Healthcare System into Information Age
Group Agrees on Healthcare Data Standards; Identifies Noteworthy Privacy and Security Practices and Defines Personal Health Records

Demonstration Project Unveiled to Save Lives, Reduce Medical Errors, and Accelerate Detection Of Bioterrorism

Survey Results Find that Consumers Want Doctors to Share Health Information With Them and Protect Their Privacy

Washington, DC. - Connecting for Health, an extraordinary collaboration of more than 100 public and private stakeholders representing every part of the health care system, today released the results of their efforts to bring electronic connectivity to healthcare to improve patient care, lower costs and protect privacy.

Their achievements in just nine months toward the adoption of healthcare data standards represents progress that has eluded the healthcare industry for more than a decade. Despite a pace and a set of goals that many thought hard to achieve, Connecting for Health announced unprecedented progress in several key areas including:

• Achieving consensus on an initial set of healthcare data standards and commitment for their adoption from a wide variety of national healthcare leaders, including a number of federal government agencies;
• Identifying and studying a number of noteworthy privacy and security practices in order to describe and disseminate feasible solutions currently in use;
• Defining the key characteristics and benefits of consumer-controlled Personal Health Records (PHRs), addressing consumer concerns to allow people to have better access to their health information.

Connecting for Health was convened by the Markle Foundation to serve as a catalyst for changes that can rapidly clear the way for the private and secure use of health information to improve quality, patient safety and enable patients to become better partners in their care. The Markle Foundation provided the initial funding of $2 million for Connecting for Health.

"Connecting for Health addresses the critical need to push healthcare into the Information Age," explained Dr. Carol Diamond, chair of Connecting for Health and managing director of the Markle Foundation's Information Technologies for Better Health program. "The healthcare industry needs to be able to deliver information where and when it is needed in a private and secure manner if we are to provide the best possible care to patients."Unlike the electronically integrated financial services industry, which allows customers to withdraw their money from an ATM machine anywhere in the country, American healthcare organizations still store most of their data on paperÑmaking it impossible for doctors to access important medical information as patients move from doctor to doctor, are treated in emergency rooms or are traveling far from home. Of the organizations that do store data electronically, few have the ability to share that data due to a lack of connectivity and use of common data standards.

An estimate from the Institute of Medicine (IOM) indicates that between 44,000 and 98,000 Americans die in hospitals each year as a result of medical errors. The same report shows that about 7,000 people per year are estimated to die from medication errors alone -- about 16 percent more deaths than the number attributable to work-related injuries. A recent study from the Center for Information Technology Leadership in Boston concludes that nationwide adoption of advanced computer systems for physician drug ordering in the outpatient setting could significantly reduce those types of errors. According to their figures more than two million adverse drug events and 190,000 hospitalizations per year could be prevented, potentially saving up to $44 billion annually in reduced medication, radiology, laboratory, and hospitalization expenditures.

"Today marks a watershed moment, with over a hundred of the largest, most influential healthcare organizations in the nation, across all sectors public, private and non-profit, coming together to say this situation must and will change," said Zoë Baird, president of the Markle Foundation. "We can no longer live in a society where we can conduct financial transactions, or make travel reservations electronically in the blink of an eye, yet we cannot mobilize these same tools to deliver quality healthcare."

Healthcare Data Standards

Beginning in September of 2002, Connecting for Health's Steering Group, whose members represent a driving force in healthcare, agreed for the first time on the voluntary adoption of an initial set of data standards and communication protocols for the sharing of healthcare information. The U.S. Government announced its adoption of these same standards in March of 2003. The standards recommended to the Steering Group throughout the project were based on the work of the Data Standards Working Group, led by chair W. Edward Hammond, PhD, Professor Emeritus, Schools of Medicine and Engineering, Duke University and President of the American Medical Informatics Association. The data standards and protocols include: HL7 v2.x data interchange standard, the HL7 Reference Information Model, the DICOM standard for imaging, the NCPDP SCRIPT prescription drug information standard, the LOINC vocabulary for laboratory tests, the IEEE/CEN/ISO 1073 medical device communication standard, the ASC X12 administrative transaction standard, HL7 Data Types, Clinical Document Architecture (CDA), and the HL7 Clinical Context Management Specification (CCOW).

"The adoption of data standards and the other actions of Connecting for Health constitute a critical first step in the creation of a truly modern healthcare infrastructure," said Janet Marchibroda, executive director of Connecting for Health and CEO of the eHealth Initiative. "This work has the potential to enable effective and secure communication among healthcare organizations, improve the quality and reduce the cost of care and strengthen the efforts of consumers, patients, and caregivers."

Privacy and Security

Without trust for the privacy and security of health information on the part of the public and the healthcare system at large, electronic systems cannot be successfully used. Connecting for Health's Privacy and Security Working Group studied noteworthy privacy and security practices in order to describe and disseminate feasible solutions currently in use in a variety of healthcare settings. The Privacy and Security Working group report notes that electronic systems can offer greater security and privacy than is possible in a paper-based record if these elements are built into the application and fully implemented.

"Introducing information technology into healthcare creates new risks to privacy as well as new means to protect privacy," said Thomas H. Murray, president of the Hastings Center and chairman of the Privacy and Security Working Group. "Our report found that with conscientious forethought and continuing care and attention, the use of information technology in healthcare could and should strengthen, not impair the security and privacy of personal health information."

Electronic Personal Medical Records

Connecting for Health's Personal Health Working Group Ð comprised of twenty consumer advocates and national innovators in the medical records field Ð identified the essential characteristics of a personal health record, including giving people control of their information and enabling them to bring together their health information from many sources: doctors, hospitals, pharmacies, insurers, and others.

In addition, Connecting For Health also released a survey of Internet users that shows a significant majority of them want the ability to access their medical information on-line, in a private and secure environment. The consumer survey conducted by the Foundation for Accountability (FACCT) showed 70 percent of on-line Americans are interested in the benefits of using one or more aspects of an electronic personal medical record. Survey respondents reported the most interest in tracking immunization and medication information, electronically transferring their medical history to new doctors and specialists, and using e-mail to communicate with their doctors. Ironically, fully 40 percent of survey respondents assume their doctors and hospitals are already using modern information technology to collect and manage their health information, when in fact fewer than eight percent of doctors actually do so.

"Based on our survey and focus groups, many consumers have unwarranted faith in the sophistication of the healthcare industry's handling of their health information, while others simply don't know how their information is managed or used" said Dr. David Lansky, president of FACCT. "The degree to which they expect their doctor or hospital to have even basic computer-based records or electronic communication between providers is far higher than the actual state of affairs."

Healthcare Collaborative Network

Connecting for Health also announced the Healthcare Collaborative Network (HCN), a demonstration project showing how electronic communications can help patients receive necessary and timely medical treatment and guard against medical errors, incorrect prescriptions and adverse drug events. "For years consumers benefited from using information technology in such simple ways as tracking repairs on their vehicles. At a minimum we need to use more IT to reduce medical errors, save more lives and enhance our personal health. The use of open data standards in HCN will help us do that," said Russell Ricci, MD and general manager of IBM Global Healthcare Industry, which has played a leadership role in the HCN, contributing both management and technology.

HCN participants include major health care systems and hospitals such as NewYork Presbyterian Hospitals, Vanderbilt University Medical Center, and Wishard Memorial Hospital. Others, including healthcare information technology suppliers representing over 90% of the market, along with practicing clinicians, public health and government agencies, such as the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA) and the Centers for Medicare & Medicaid Services (CMS), will also participate. "NewYork-Presbyterian Hospital is participating in the Healthcare Collaborative Network because we believe that information technology provides an unprecedented opportunity to enhance t he quality of care that we provide to our patients," said Dr. Herbert Pardes, president and CEO of New York-Presbyterian Hospital and CEO of New York-Presbyterian Healthcare System. "But before the full value of IT can be realized, an interconnected healthcare network must be created that links providers, insurers, regulators and patients. To do this requires standards. It is our duty as healthcare professionals to take every opportunity available to continuously improve the quality of care we provide." The HCN pilot will involve data from clinical procedures, lab results, pharmacy prescriptions and diagnostic summaries. Respiratory viral tests and lab results will be sent to the CDC for surveillance on infectious diseases. The FDA will get data on whether patients are showing adverse reactions to various monitored medications. CMS will receive data relevant to the quality of care provided to its beneficiaries.

About Connecting for Health

Connecting for Health, a Public-Private Collaborative, was convened by the Markle Foundation to address the challenges of mobilizing information to improve quality, conduct timely research, empower patients to become full participants in their care, and bolster the public health infrastructure. The purpose of the Collaborative is to catalyze specific actions on a national basis that will rapidly clear the way for an interconnected, electronic national health information infrastructure. For more information, see www.connectingforhealth.org.

About the Markle Foundation

Connecting for Health is a project of the Markle Foundation, a New York-based private philanthropy that works to realize the potential of emerging information and communications technologies to improve people's lives. The Markle Foundation's overarching goal in the health area is to accelerate the rate at which information technology enables consumers and the health system that supports them to improve health and health care. For more information, see www.markle.org.

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