Americans Support Online Personal Health Records; Patient Privacy and Control Over Their Own Information Are Crucial to Acceptance | Markle | Advancing America's Future
Americans Support Online Personal Health Records; Patient Privacy and Control Over Their Own Information Are Crucial to Acceptance | Markle | Advancing America's Future

Americans Support Online Personal Health Records; Patient Privacy and Control Over Their Own Information Are Crucial to Acceptance

Publication Date: October 11, 2005 | Back to Latest News

WASHINGTON, DC—The American public believes strongly that electronic medical records can make the difference between life and death in emergencies, new research being released today shows. Nearly three out of four Americans (72%) say they favor the establishment of a nationwide electronic information exchange that would allow a patient’s health information to be shared with authorized individuals quickly, privately, and securely via the Internet. However, ensuring patient privacy and control over their own records is essential to full consumer acceptance of such an exchange. More than three out of four Americans (79%) say making sure their records could be shared only after they provide permission is a priority.

The survey results will be presented Oct. 11 at the first national conference to focus on the needs and concerns of consumers, including privacy, in the rapidly growing field of health information technology. Conference organizers also will present seven consumer and patient principles, which have been endorsed by a wide range of consumer, business, and other organizations involved in health care. The principles are designed to protect privacy and ensure that personal health information is used appropriately in health information exchange. Sponsored by the Markle Foundation, the Robert Wood Johnson Foundation (RWJF), and the Agency for Healthcare Research and Quality (AHRQ), the conference will focus on advances in personal health technology and the core principles for creating a health information environment in which consumers can use information technology to participate more fully in managing their health and health care. More than 700 individuals registered to take part in the conference, including consumer advocates, business leaders, entrepreneurs, medical professionals, and government officials.

“Americans use digital information technology to manage their finances, pay bills, book flights, and customize the music they listen to, and our research shows they now want to use health information technology to get the best care possible for themselves and be better able to manage their own health,” said Zoë Baird, president of the Markle Foundation, which funded the research. “People realize that if they or those they love are in an accident or disaster, having their medical records available at a moment’s notice through secure, electronic information exchange could mean the difference between life and death.”

“We are on the cusp of a technological revolution in health care, as more personal digital health products are developed, and consumers in the ‘iPod generation’ are more receptive to using them,” said David Lansky, senior director of the health program at the Markle Foundation. “Each device that is developed should meet consumers’ needs for privacy and security, as should the entire nationwide health information environment in which consumers and health professionals will be using these digital tools. That is why these new patient and consumer principles are being proposed.”

The number and types of personal digital health technologies is growing rapidly, and a bipartisan group of national leaders is keenly interested in how information technology can transform health care. Business leaders, including Andy Grove of Intel, and national leaders, including President Bush, Senate Majority Leader Bill Frist (R-Tenn.), Sen. Hillary Clinton (D-N.Y.), Rep. Nancy Johnson (R-Conn.), Rep. Patrick Kennedy (D-R.I.), and former House Speaker Newt Gingrich, are advocating the use of information technology to improve the quality of health care, reduce medical errors, and increase efficiency. President Bush has called for all Americans to have an electronic personal health record within 10 years.

The survey released at today’s conference shows that four in five Americans (80%) believe that if physicians kept electronic medical records on their patients, health care quality would improve and medical errors would be reduced, because authorized doctors would be able to retrieve a patient’s medical history in a matter of seconds. An equal number (81%) believe that the ability of researchers to review millions of records anonymously to determine best treatment practices would help all doctors improve the quality of medical care.

Despite these high levels of support for health information technology, keeping electronic medical information private and secure remains a top concern for consumers. Today’s research shows that people are much more likely to support online medical records if they have control over their own information and safeguards to protect privacy are in place. Public Opinion Strategies, Alexandria, VA, conducted the survey Sept. 20-22, 2005. The survey of 800 adults has a margin of error of +/- 3.46 percent. According to the poll:

Individuals want to review who has seen their medical information.
Eighty-one percent of respondents say reviewing who has had access to their personal health information is a “top” or “high” priority.
Patients want to be asked before their information is shared.
Seventy-nine percent of respondents say it is a “top” or “high” priority that their medical information be shared electronically only with their permission.
Consumers want the identity of anyone who sees their records to be carefully confirmed.
Ninety-one percent of respondents say carefully confirming the identity of anyone using the system to prevent unauthorized access or cases of mistaken identify is a “top” or “high” priority.
The public does not want employers to have access to workers’ health information.
Sixty-eight percent of respondents say it is a “top” or “high” priority that employers not have access to secure health information networks.

A separate study, conducted by Public Opinion Strategies on Sept. 28-Oct. 2, 2005, (800 adults; margin of error +/- 3.46%) showed that consumers would use their own secure, online “personal health record” account to better manage their health care. Nearly seven out of 10 respondents (69%) said they would use this online service to check for mistakes in their medical records, as well as to check and refill prescriptions (68%). Nearly six in 10 respondents said they would like to get medical results over the Internet (58%) or conduct secure and private email communications with their doctors (57%). Taken together, these results show a strong interest among consumers in using health information technology to more fully participate in their own health care.

The new consumer and patient principles to guide the development of online health information exchange were developed by the Personal Health Technology Council, a group of 44 leading consumer and privacy advocates, medical professionals, informatics experts, payers, technologists, federal policymakers, bio-ethicists, and researchers. The group believes these principles should guide developments in the private and public sectors, including several pieces of legislation that have already been introduced in Congress and would increase the use of electronic health records within any new nationwide health information exchange.

The seven patient and consumer principles endorsed by the Personal Health Technology Council are:

1. Individuals should be able to access their health and medical data conveniently and affordably.
2. Individuals should be able to authorize when and with whom their health data are shared. Individuals should be able to refuse to make their health data available for sharing by opting out of nationwide information exchange.
3. Individuals should be able to designate someone else, such as a loved one, to have access to and exercise control over how their records are shared.
4. Individuals should receive easily understood information about all the ways that their health data may be used or shared.
5. Individuals should be able to review which entities have had access to their personal health data.
6. Electronic health data exchanges must protect the integrity, security, privacy, and confidentiality of an individual’s information.
7. Independent bodies, accountable to the public, should oversee local and nationwide electronic health data exchanges. No single stakeholder group should dominate these oversight bodies, and consumer representatives selected by their peers should participate as full voting members.

“When all Americans have the ability to review their own medical records online, we then will begin to see a health care system that reduces disparities in medical care, and increases the quality of care for all Americans,” said John R. Lumpkin, M.D., M.P.H., senior vice president and the director of the Health Care Group for RWJF. “People want to take advantage of health information technology, but they need to trust that the new information environment respects their privacy and ensures the security of their information. Therefore, the new health information technologies that are being created, as well as the health information environment itself, must focus on consumers’ concerns about privacy, security, and personal control.”

“Consumers have clearly understood how electronic records can improve quality of care, and the recent experience of lost medical records in hurricane Katrina has made this lesson even more vivid,” said AHRQ Director Carolyn Clancy, M.D. “But access and control for the patient must be built in from the beginning. Under HHS Secretary Mike Leavitt’s leadership, AHRQ will help lay the groundwork for privacy and security as an integral part of building the technical foundation for electronic health records.”