Consumer Role Is Key To Improving Health Care

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The future of health care should encourage expanded use of information tools to help consumers better manage their health, 56 diverse organizations said today as they embraced a framework for personal health information access and privacy.

“Consumers need to be full participants in modern health information tools and services to help them prevent illness, communicate better with clinicians, understand costs and treatment options, make better health decisions, and take better care of loved ones,” the group said in a joint statement.

"Health reform requires putting the power of information at the fingertips of 300 million consumers," said Zoe Baird, president of the Markle Foundation, which convened the group. “If we do this right, consumers will contribute to a health care system that rewards quality, slows an unsustainable spiral of costs, and protects the privacy of sensitive information.”

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The recently enacted American Recovery and Reinvestment Act establishes billions of dollars in incentives for clinicians and hospitals to use health information technology, including electronic health records (EHRs). The law also clarifies that individuals have the right to receive copies of personal health information from EHRs in electronic formats and authorize their information to be stored in a service of the individual’s choosing.

“In the age of the Internet, there is vast potential for consumers to connect online to new services to make their lives easier and healthier,” said Carol Diamond, MD, MPH, chair of Markle Connecting for Health, which convened the group. “Providing consumers with electronic access to their information should be one of the things that the health IT incentives stimulate, so that many services may flourish by using information according to the individual's needs and wishes.”

Deven McGraw, director of the Health Privacy Project for the Center for Democracy and Technology, said: “Sound policies are key to public trust — without which we will not see the benefits of health IT investments. Consumers and clinicians will not participate if they fear information will not be protected.”

The Markle Connecting for Health Collaborative’s Common Framework for Networked Personal Health Information — a set of practices to improve consumer access to personal health information and protect privacy — has been endorsed by a broad group of organizations.

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