Peel pushes for 'informed consent' over every element of patient data

Depending on your point of view, Dr. Deborah Peel and her Patient Privacy Rights Foundation either continue to rail against the national push for EHRs or take further steps to hold policymakers honest. (We're not going to go as far as ZDNet Healthcare's Dana Blankenhorn, who recently called Peel a "Luddite" whose organization's goal "appears to be keeping healthcare in the paper-based dark ages.")

The latest from Patient Privacy Rights is a white paper making "The Case for Informed Consent" to give patients more complete control over their personal health information. In the paper, Peel dismisses arguments that it's too technically difficult and too expensive to design health IT systems that offer patients granular control over what elements of their records healthcare organizations can share.

"Robust privacy-enhancing technologies are in use now that ensure both progress and privacy," the paper says. "Technology can lower costs by enabling individual control over protected health information [PHI] today. Using consent will simplify data exchange by eliminating the need for complex and expensive data-sharing agreements between 'stakeholders' such as covered entities, business associates, and other secondary and tertiary businesses and corporations."

The problem, according to Peel, is that health IT and data-mining companies make so much money off the secondary use of health data--without express patient consent--that they will go to great lengths to protect their cash cow. "Patients know what they want," Peel says in a press release. "It is a mistake to design health IT in a paternalistic manner--assuming a corporation, vendor, provider or government agency knows what is best for each individual patient."

Peel believes that attitude works against the spirit of the federal EHR stimulus program. "Protecting privacy is not just a moral or ethical necessity, but a practical one," the paper says. "Billions of dollars have been allocated in the American Recovery and Reinvestment Act to establish an EHR for every American. If patients cannot control personal information stored in EHRs, they will not trust health IT systems or data exchanges and will avoid them."

For additional details:

- download the Patient Privacy Rights Foundation white paper (.pdf)
- read the related press release (.pdf)

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