THE ISSUE

From Personal Health Records to Nationwide Electronic Health Information Exchange

Health care lags behind banking, credit, retail, and many other sectors of American society in moving from inefficient paper records to highly efficient and effective systems of electronic communication. Given our ability to access our own banking records at almost any ATM in the country, why can't we access our most vital medical information in health care? Fortunately, the number and types of health information technologies are rapidly expanding and making it possible for more Americans to gain access to their personal health information and participate more fully in their own health care. Ranging from individual personal health records to major systems for electronic health information exchange, these innovations promise to change much about American health care. Moreover, the White House and HHS, Congress, and many private sector businesses and organizations are now considering sharply different proposals to transform how Americans will gain access to and use health IT for years to come.

The goal of all Americans adopting personal health records has gained tremendous support in recent months, including that of President Bush, who believes that every American should have a personal electronic health record (PHR) within 10 years.

PHRs are a set of computer- and Internet-based tools that allow people to access and coordinate their health information and make appropriate parts of it available to those who need it. Depending on the type of PHR, individuals may enter their own health information, or view records from their doctor's office or from claims databases. Similar to online banking, PHRs also may be a platform for health care transactions, such as secure e-mails between patients and their doctors or online prescription refills, electronic home monitoring of chronic illness, and remote medical consultations. These developments foretell a much more personalized practice of medicine for the future that will require trustworthy systems for storing very personal information, including an individual's genome.

More broadly, the Markle Foundation's Connecting for Health Collaborative and many organizations, businesses, and the federal government are working to establish a nationwide system of electronic health information exchange. Such a system would allow timely access to one's medical records from any point in the United States, using many different kinds of software and hardware. This kind of exchange, based on open common standards and policies, is expected to improve the quality of care and reduce costs related to medical errors and duplicative tests.

At this historic juncture in the history of health IT, it is critically important that consumer and patient advocates, as well as private and public purchasers of health care, understand these technologies and related proposals and how they will advance or inhibit the goals of patient empowerment, privacy protection, and quality, affordable health care.

The Markle Foundation Health Program
The Markle Foundation Health Program is committed to accelerating the ability of patients and consumers to use IT to improve their health and health care, while protecting patient privacy. The Markle Foundation envisions a time in the near future when individuals will be able to gain access to their own health information through nationwide electronic health information exchange, personal health records, and other emerging technologies, making it possible for patients to participate more fully in their own health care.

The Personal Health Technology Initiative
The Personal Health Technology Initiative is a major effort by the Markle Foundation Health Program to advocate for patient empowerment through personal health records and other health information technologies in the context of an emerging system of nationwide health information exchange.

The Personal Health Technology Initiative envisions a future electronic health information environment that:

• Allows patients, consumers, and caregivers to take a very active role in health and health care
• Supports effective and efficient communication between physicians and other health providers and the individuals and families in their care
• Improves the quality of health care
• Reduces medical errors and enhances safety
• Emphasizes continuity and convenience of care
• Safeguards patient privacy
• Earns and keeps the public's trust

For More Information
Recent reports, press releases, and other resources and information are available at www.markle.org and www.markle.org/markle_programs/healthcare/index.php.