Part two of a two-part series (Access part one here):
Emerging technology allows patients to control who has access to their medical information, but there is still some resistance to its use from the healthcare community. Now, however, there is some discussion thatunless consumers are given this controlthe general public will resist the adoption of health information technology.
Kelly Callahan, who heads business development for HIPAAT, a Mississauga, Ontario-based IT company working on patient-access control applications, said the U.S. should learn from the mistakes made in the U.K., where officials forged ahead with plans that were not fully accepted by the public.
"It's being recognized that you can't invest loads of money into a national program if the public doesn't buy into it," he says. "In the U.K., they were five years into a national program and they had to pull back and address what they could do to get the public's confidence."
Writing in the British Medical Journal last July, John Halamka, a physician and chief information officer at CareGroup Health System in Boston, noted how important patient consent was to widespread adoption of health IT.
"We have only one opportunity to build a healthcare information superhighway that patients and providers can trust," wrote Halamka, who's also associate dean for educational technology at Harvard Medical School. "We should let the patients decide if they want to drive on it."
Last August, the American Psychiatric Association called for the Certification Commission for Healthcare Information Technology to add access-control functions to the panel's interoperability standards for ambulatory EMRs.
In September 2006, the U.K.'s National Health Service Care Record Programme Board agreed to a "sealed envelope" application where patients can decide if certain parts of their personal record could be blocked from general view, and estimated that the "sealing functionality" will become available sometime within the next two years. Ontario's Personal Health Information Protection Act calls for allowing patients to put such information in a "lockbox." In the U.S., such features are described as "break glass" applications with patients and others alerted if this "glass seal" is broken.
Callahan says that HIPAAT has been active with the Halamka-chaired Healthcare Information Technology Standards Panel, which was created in 2005 by the American National Standards Institute, and was awarded a $3.3 million HHS contract to develop a process to harmonize standards for health information exchanges.
He adds that vendors that serve on HITSP and similar bodies are interested in what's happening in other countries because "you can grab things and modify them rather than having to create something newand there's also the perspective that it would have been well-vetted already." Callahan also notes that the U.K. learned some hard lessons, and people around the world will try to avoid repeating other people's mistakes.
So, while technical and political barriers to allowing patients more control over who sees their data are falling, Callahan says, cultural obstacles remain.
"There are healthcare providers who feel they have the patient's best interest at heart, and would not want to have patients manipulate their diagnosis or not have full access to their information to provide or render care," Callahan says. "At the end of the day, people who used to be in control won't have as much control anymore."
And, the sooner physicians figure that out, says Marc Pierson, the better off everyone will be and the quicker health IT adoption will spread.
Pierson, who is the vice president of clinical information and special projects (but likes to use the title "community informatics") at PeaceHealth's 235-bed St. Joseph Hospital in Bellingham, Wash., says "a lot of people would share more information, but they don't want to share everything."
In 2002, St. Joseph joined with other healthcare organizations in Whatcom County to develop a communitywide Web-based personal health record financed by a $1.9 million Robert Wood Johnson Foundation grant. He said the PHR, called Shared Care Plan, is now used by about 1,200 people in his community of 173,000, and he maintains that patient-consent controls haven't led to problems.
"We have yet to see anyone say they don't want the ER doc to see anything," Pierson says. "They're not dumb. They want the ER doc to see everythingbut why should their dermatologist know about the gonorrhea they had in their 20s?"
Pierson says he expects the use of the Shared Care Plan to multiply exponentially in the years ahead and much of that success is because it allows people to choose what people can see, who can see it and when.
"We got a bunch of people to say what they wantand they asked for that level of" detail, Pearson says. "When people get a choice, they're going to pick the choice that gives them the most control."
He adds that providers will still have their own individual patient records that they generate that patients will not have access to, but he also sees the time when copies of all laboratory results and diagnostic images will automatically be sent to a patient's PHR. Also, he says that it's his belief that widespread use of PHRswhich, on a large scale, will cost about $2.50 per person annuallywill happen a lot faster than the development of a nationwide health information network.
"They could probably give every patient in the country a PHR for what it would cost to give every doctor in Chicago an EMR," Pierson says.
He adds that recent gains by consumer activists have made him more confident that the "powers that be" won't overrule the public's wishes for health IT.
"I'm so incredibly optimistic that the right thing is going to happen," Pierson says. "It's only a question of when and who's going to do it."
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