Dave deBronkart, the New Hampshire cancer survivor widely known as "e-Patient Dave," blew the whistle on the inaccuracy of claims data in Google Health PHRs at Boston's Beth Israel Deaconess Medical Center a couple of months ago. Now, he is one of many patient advocates who wants HHS regulations on "meaningful use" of health IT to include patient-centric principles. That starts with giving patients electronic access to their own medical records, something physicians have fought for years. "Just try getting your own records sometime," deBronkart said in a Federal Computer Week story.
He has some allies in the health IT industry. "Health IT systems are being designed without enough consumer involvement," said George Van Antwerp, vice president of solutions strategy at Silverlink Communications, a company that offers consumer-focused technology to health systems and payers. "If you want health literacy, you have to give people access to the data and the tools."
The story also considers privacy implications of wider patient access. Well-known privacy hawk Dr. Deborah Peel, founder of the Patient Privacy Rights Foundation, who alerted us to this story, says that the UK's National Health Service had to start its EMR strategy over after discovering that it could not force the collection of every patient's personal health information. "Unless our government wakes up, the stimulus billions will be spent on products/systems that the public will never trust," Peel writes in an email.
For more on patient access:
- read this Federal Computer Week article