It is my belief that the entire health IT standards-setting process is controlled by a few large corporate health IT vendors that dominate the market and view standards-setting as the way to accomplish their goals to:

• Establish monopolies of their proprietary software and systems; 

• Lock-in proprietary technical standards that prevent patients from controlling use of and access to personal health information (PHI);
• Prevent innovation by enshrining legacy technologies as national "standards";
• Keep incumbents in control of the health IT market;
-- Maintain the secret and lucrative industry of health data theft, mining and sales.

We do not need the Health IT Standards Panel (HITSP) to be the standard-setting entity within the national Health IT Standards Committee, especially because HITSP is industry-dominated. Indeed, HITSP has operated in an 'information-free' zone about Americans' rights to privacy. Instead of ensuring that all standards guarantee our privacy rights, it looks at what's best for corporate America.

What the public needs is a process where patients and their health professionals can decide what functions electronic health systems should have in order to deliver the best care with privacy.

The process of determining these functions should be left in the hands of patients, health professionals, independent consumer health privacy and security experts. The National Institute of Standards and Technology should be at the table, not industry – except in an advisory capacity.

When the market for online shopping was exploding, we did not need a government and industry run panel to write standards for e-commerce. Instead, this industry developed hundreds of different products and services that enabled consumers to buy products online safely and securely. In the same way, consumers should be able to choose hospitals and doctors based upon which have electronic systems that deliver the best control over their health information, while improving treatment.

It does not matter which systems, proprietary or open, have features that ensure Americans maintain their longstanding right to privacy. It just matters that all these systems have robust consent management tools that conform with patients' individual rights to control health information.

Given that technology exists that now enables us to pick and choose exactly when and how we want which pieces of our personal information to be used, there is no need ever again to use the ubiquitous blanket consent-agreements that have long been the standard for data disclosure in the healthcare system. The functions that enable personal privacy management are the single most important features the public wants in health IT systems.

Neither the Health IT Policy Committee nor the Health IT  Standards Committees have addressed recommendations by the Coalition for Patient Privacy's recommendations on "meaningful use" criteria for electronic health records. But these comments from the bi-partisan coalition represent the views of millions of Americans.

Unless the Department of Health and Human Services and the Office of the National Coordinator of Health IT heed the views of consumers in these matters, the result will be similar to what happened when the U.K. ignored the views of its public in developing its national health IT system: tens of billions of dollars wasted building a system that the public will reject.

-- The writer is  founder and chair of Patient Privacy Rights, a consumer advocacy organization.