Related Links

Thirty-one organizations, working with the Connecting for Health public-private industry consortium, have endorsed consensus-based policies and practices for personal health records and related services on the Internet.

The organizations have worked for 18 months to create the best practices, called a Common Framework for Networked Personal Health Information.

The practices cover such areas as authentication of consumers; audit trails; limitations on identifying information; portability of information; security and systems requirements; architecture to facilitate consumer participation, policy notices to consumers; provisions for consumer consent; chain-of-trust agreements; and notification of misuse or breach of information.

Charter organizations endorsing the framework are: AARP; Aetna; American Academy of Family Physicians; Association of Online Cancer Resources; America’s Health Insurance Plans; Blue Cross Blue Shield Association; CapMed; Center for Democracy and Technology; Center on Medical Record Rights and Privacy; Cisco Systems; Consumers Union; Dossia; FollowMe; Google; Geisinger Health System; and Health Care for All.

Also: InterComponentWare; Intuit; MedicAlert; Microsoft; National Breast Cancer Coalition; National Partnership for Women and Families; NewYork-Presbyterian Hospital; Pacific Business Group on Health; Palo Alto Medical Foundation; Partners Healthcare System; RxHub; SureScripts; U.S. Department of Veterans Affairs; Vanderbilt Center for Better Health; and WebMD.

The New York-based Markle Foundation, which supports Connecting for Health, also contracted in May for a national, representative online survey of consumer views on health care privacy issues. The survey, designed by Columbia University professor emeritus Allan Westin, received 1,580 responses and has a margin of error of plus or minus 2.5%.

Among its findings, only 2.7% of respondents, equating to 6.1 million U.S. residents, have a PHR today. Of those without a PHR, 57% cited privacy concerns as a reason for not having one. Other reasons included: not believing a PHR is needed to satisfactorily handle health needs; discomfort with computers and/or electronic records; and too much time required to transfer paper records to electronic data.

However, large majorities of surveyed individuals believe PHRs would help identify errors in their medical records, track health-related expenses, avoid duplicative tests and treatments, keep physicians informed of health status, move more easily among physicians, manage the health of loved ones, get tailored treatments, and manage their own health and lifestyle.

The Common Framework for Networked Personal Health Information and additional survey results are available at connectingforhealth.org.