The group, which includes Dossia, the employer group started by Intel, Wal-Mart, Pitney Bowes, BP and Applied Materials, hopes the guidelines will help gain the trust of consumers and employees concerned that online health records would be vulnerable to theft or misuse by an employer or health insurer.
Participants that included employers and health insurers as well as companies that have developed health care tools for consumers such as WebMD, Microsoft and Google, endorsed a commitment to never use the information in a personal health record to discriminate against an individual who is seeking health insurance or employment. The coalition said it would create policies and controls so that information in a health record cannot be obtained by employers and health insurers without the consent of the individual.
Zoe Baird, president of the Markle Foundation, which organized the effort, said “the information is not to be used for discriminatory purposes. Aetna and others have signed onto this.”
Companies that offer personal health records should, according to the written framework released June 25, “take a strong public and legal stand against third parties seeking to make their own access to consumer data streams and networked PHR information a condition of an individual’s employment, benefits, or other services important to the well-being of individuals.”
Colin Evans, president of the employer group Dossia, said the framework aligned with the understanding among the group’s employer-members that companies will not have access to the personal health records of employees. Dossia has said that employers will not have access to data from the personal health records even if they want to use it anonymously to develop targeted wellness programs.
“Our success depends on our employees to trust the system,” Evans said during a conference call announcing the agreement.
James X. Dempsey, vice president for public policy of the Center for Democracy and Technology, said the policy proposals go further than current laws, like HIPAA, to protect patient privacy.
Steven Findlay, a health care analyst for Consumers Union, the publisher of Consumer Reports, said the framework showed an extraordinary amount of cooperation between different, sometimes competing, interests.