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The Obama health team at HHS and ONC are gradually establishing the rules that will determine how approximately $34 billion in ARRA/HITECH funds are spent on health IT over the next several years. But there is a “missing link” in these deliberations that, so far, has not been addressed by Congress or the Administration: how the patient’s voice can be “meaningfully used” in health IT. After all, we, the taxpayers, will pay for all this hardware, software, and associated training. There are many more consumers of health care than doctors or health care professionals. Shouldn’t we have a say in what matters – in what is meaningful – to us?
It may have been an oversight, but patients and consumers have been left very much on HITECH’s sidelines. The attention and the money is squarely aimed at the health care providers – doctors, clinics, and hospitals. The Act’s intention is to create “interoperable” electronic health records that, in the future, will be more accessible to them: doctors, clinics, and hospitals. This is a policy that is tied unnecessarily to an outdated vision. It is provider-centered, paternalistic and top-down. But it could be re-imagined to take advantage of the new ways millions of consumers, patients, and care giving families are using information and communications technologies to solve problems, form online communities, and share information and knowledge.
