Dossia, Google, Intuit, Microsoft and WebMD have joined healthcare providers, payors and consumer and privacy groups to establish a set of practices for new internet services that help consumers track and improve their health. The framework defines practices that can help protect personal information and increase consumer participation in online personal health records (PHRs).
“Consumer demand for electronic PHRs and online health services will take off when consumers trust that personal information will be protected,” said Zoë Baird, president of the Markle Foundation, which organized the consensus framework.
The agreement comes as technology companies, healthcare delivery systems, payors, large employers and others are proliferating options for consumers to keep their own copies of health information and connect to health-related services online, according to Connecting for Health, a public-private collaboration for PHRs. However, this emerging, new space is evolving without a common set of information practices and expectations.
“We have achieved the first detailed, consensus-based approach to consumer access and privacy practices for important new internet-based health information services,” said Carol Diamond, MD, Markle managing director and chair of Connecting for Health.
The framework, developed by Connecting for Health, includes four overviews and 14 specific technology and policy approaches for consumers to access health services; to obtain and control copies of health information about them; to authorize the sharing of their information with others; and sound privacy and security practices.
In 2006, Connecting for Health released a framework of policy and technology resources for privacy and security in internet-based networks connecting medical professionals from different institutions and clinics. The new framework deals with networks that include individual consumers as participants who can collect their information, store it in applications they control and share it with whom they want.
"Some of the new services aren't covered under federal health information privacy laws, and there is uncertainty about privacy protections," said Steve Findlay, health care analyst from Consumers Union, publisher of Consumer Reports. "This collaboration lays out specific practices that all PHRs and related services can use, whether they are covered by federal privacy rules or not, so they can enhance public trust.”
The following organizations also endorsed the framework: AARP • Aetna • American Academy of Family Physicians • Association of Online Cancer Resources • America's Health Insurance Plans • BlueCross BlueShield Association • CapMed • Center for Democracy and Technology • Center on Medical Record Rights and Privacy • Cisco Systems • Consumers Union • FollowMe • Geisinger Health System • Health Care For All • InterComponentWare • MedicAlert • 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.