When Kaiser Permanente started giving patients online access to their medical records nearly five years ago, it offered the same lab reports doctors saw--complete with warning flags highlighting any abnormal results.
The capital letters - such as "H" for "high" -- alarmed many patients. So now the giant health plan has modified the policy for most of its members. It displays lab results in a more neutral way, showing patients how they compare to normal ranges and advising them to contact their health practitioner with any questions.
The experience at Kaiser reflects the sensitivities that can arise over how much medical data patients should be entitled to view and how quickly--a debate that's intensifying as medicine enters the digital era.
Federal officials hope to create a digital medical record for every American within the next five years and are set to use from $14 billion to $27 billion in stimulus money to help doctors and hospitals adopt the systems. One goal is to "provide patients and their families with timely access to data, knowledge and tools to make informed decisions and to manage their health."
To that end, doctors receiving stimulus money starting next year must be able to give patients electronic copies of their "health information" in as little as 48 hours after an office visit, according to draft regulations issued in late December.
But the proposed rules don't specify precisely how much detail doctors and medical systems are obliged to report. Lack of agreement on this issue, and others, suggests a bumpy road ahead as patients begin to assert control over records that thus far have remained almost exclusively in the custody of medical providers.
Many health analysts and physicians say the new regulations are open to interpretation, even the term "health information" itself. "There's no definition of what a medical record is," said Steven E. Waldren, a doctor who specializes in health information technology issues for the American Academy of Family Physicians.
More fundamentally, some doctors feel that disclosing too much material without a full explanation of what it means may needlessly upset people and potentially do more harm than good.
"Sometimes information without context is more confusing to the patient," said David Ford, associate director for medical and regulatory policy with the California Medical Association. Doctors should be able to "filter it in a way that's beneficial to the patient," he said.
Lab findings that fall outside the norms, for instance, may in fact be normal for some people, said Waldren, of the family doctors' group. "You're going to have a lot of abnormal results on paper that don't mean anything. Some patients will be freaking out," he said.
Many doctors also question the wisdom of releasing notes of their observations about patients as part of the medical file, at least without first having time to thoroughly review sensitive portions.
By contrast, consumer groups argue that patients generally should view the same records their doctors do. Exceptions, said Consumers Union official Steve Findlay, might revolve around mental health problems or other highly sensitive ailments. Most doctors would want to tell their patients of a cancer diagnosis in person and not have them discover it by logging on to their health plan's Web site, for instance.
"This is an area where there's no set policies yet. That's part of the problem at the federal level, " said Findlay, who also serves on a government panel that helped set standards for use of digital medical records.
"The confusing thing here is that most of what doctors write down in a medical record isn't that useful to a patient without assistance to interpret," Findlay added. "This is one of those areas that everybody is thinking through."
How patients might read--or misinterpret--lab results caused Kaiser Permanente to backtrack on full disclosure.
A national leader in digital record-keeping, Kaiser granted patients online access to their medical records as far back as 2004. Lab reports are among the files most accessed by its more than 8 million members, who in 2008 viewed over 16 million of them online, according to Kaiser officials.
At first the health plan included the warning flags its doctors see. But it changed the practice in California -- where most of its members reside -- and in some other regions after hearing from concerned patients. It now lists only the normal range and the patient's value.
Kaiser spokeswoman Trish Doherty said the health plan "started out showing the flags, but where it's been a concern to our members, we removed them." She said that Kaiser had not received complaints about the change.
"Physicians will still communicate with patients about out-of-range test results, by visit or phone, letter or e-mail, helping them put the results into context for their particular clinical situation," Doherty said.
Yet the policy change disturbs Kaiser member Robert Finney. He's a former health cost containment manager from Encinitas, Calif., and a critic of managed care plans.
In May 2006, when Finney and his wife, Jacquelyn, downloaded copies of lab results they saw warning flags indicating two elevated results. One flagged a high lipid level, which could suggest possible health problems, while the other showed high levels of blood cholesterol. Both were marked with an "H," which an accompanying note said stood for high.
Logging into the online system in November 2008, they discovered that the numbers hadn't changed, but the "H" warning flags had been electronically scrubbed out of the file.
Finney said in an interview that he believes Kaiser removed the flags to spare doctors and other medical staff from having to take numerous calls from patients worried by seeing them. "Patients and doctors should have the same information,'' he said.
"Doctors see a big red flag come up. That's what they took off the records made available to us," said Finney. "Kaiser has stripped out a level of awareness. If the patient isn't there asking for an explanation (of an abnormal result) that has to translate into less care."
Kaiser's Internet services medical director, Kate Christensen, denied the health plan was trying to save money, noting, "we were trying not to alarm and confuse people."
At Intermountain Health Care in Utah, another leader in the use of digital records, more than 110,000 patients have viewed lab results online. The health system also began by flagging abnormal results but abandoned the practice. "We no longer flag "Low" or "High" results as the doctors thought that interpretation was needed to decide this based on the patients' health status/history," an official said.
"We have not had any major problems with this practice," according to Belle Rowan, business manager of the Intermountain's MyHealth Web site.
Yet another medical system that pioneered patient access to electronic health records, Harvard-affiliated Beth Israel Deaconess Medical Center in Boston, handles lab results differently.
"We show normal ranges, abnormal flags and link to educational materials," said John Halamka, a physician who oversees the system. The educational materials are included "so that patients can understand normal ranges and the meaning of abnormal results. This has worked well for the past 10 years," said Halamka, vice-chair for the government digital health records standards panel.
While disclosure policies vary, demand for online access to medical files is expected to grow with the infusion of stimulus cash.
Federal officials expect many Americans to not only store their personal health records in a digital file, but also to share them with doctors and hospitals securely over the Internet. Microsoft, Google and many other technology companies are already marketing personal health records software and expect to see health information flow in cyberspace much the same as any other commercial transactions.
Michael Solomon, a Florida consultant who heads a health information technology task force on personal health records, said the upcoming federal regulations will push doctors and hospitals toward accommodating patients who want greater control over their health care.
"We believe that will be a real catalyst," he said.
Solomon acknowledged that thorny issues remain, such as whether patients should be able to edit files so that potentially embarrassing details can be taken out. He said some systems allow patients only to annotate material sent from their health providers--not to delete it.
Solomon said many of these issues will require medical providers to spend more time helping their patients understand the complexities of their health records and history.
"There is an investment in patient education so they understand what types of information they might receive and what it means and what they should do with it," he said.
Robert Tennant of the Medical Group Management Association, which represents group practices with nearly 275,000 physicians, said he hopes government officials, who are accepting public comments on the proposed regulations, will scale back several key requirements. For example, he said, under the current rules, doctors have 30 days to fulfill records requests from their patients. The draft regulations give them 48 hours. They also would have to provide digital copies of lab results and other records within 96 hours of receiving them.
That's too quick to be reasonable, said Tennant, adding: "Where did they get the 48 hours from? Is there a scientific reason for that?"
His group also wants to see federal officials clarify what doctors must release as part of a medical record. For doctors, "there are a lot of issues here," said Tennant. "On the surface it looks easy, but when you dive down in you see a significant burden."