Requesting records—from the patient

Pilot projects are using new software systems to allow physicians in different facilities to improve, or even begin, communication with each other.

How much easier would life be if you could view the outpatient medical records of your patients immediately after admission? Such sharing of electronic medical records is a major goal of health care leaders, but one that is far from completion. Pilot projects are using new software systems to allow physicians in different facilities to improve, or even begin, communication with each other.

But one recently completed pilot as well as experiences at a few hospitals hint at the potential of another go-between: the patient. Some health systems have been experimenting with giving patients convenient access to their medical records through the Internet. The trend is primarily in primary care, but may affect hospitalists as well, if inpatients share their outpatient records with hospitalists through the new systems or come to expect the same kind of access from hospitals that these pilot programs are trying out.

Photo by Thinkstock
Photo by Thinkstock.

The University of Texas MD Anderson Cancer Center launched a system in 2009 in which both referring physicians and patients can log in to see records, including doctors' notes. In addition, a large pilot study of open access involving patients at Geisinger Health System in Pennsylvania, Beth Israel Deaconess Medical Center in Boston and Harborview Medical Center in Seattle just wrapped up.

“We need to improve our ability to communicate among ourselves but also be developing these systems with an eye towards opening up the communication full circle to include the patient,” said Joann G. Elmore, MD, MPH, an internist at Harborview and coauthor of a study of the pilot that was published in the Dec. 20, 2011 Annals of Internal Medicine.

For the study, researchers recruited more than 100 primary care physicians who were willing to share their records with patients. Patients could log in to the system at any time and were encouraged to do so whenever new information was available.

“They got an email message telling them that a note was ready to read, and then before they had a subsequent visit, they got another message saying, ‘You have a visit coming up. You might want to review your last note,’” said Jan Walker, RN, MBA, an instructor in medicine at Beth Israel Deaconess and lead author of the study. Among other features, system users could also view their lab results and, at two of the three sites, send secure messages to their clinicians.

By extension, the system also provided access to other physicians who treated the participating patients. “The patient can say, ‘Bring me a portable computer and I'll get you my records,’” described Dr. Elmore.

Such access could improve treatment and reduce repeat testing, especially for some of the patients treated at Harborview, a safety-net hospital. “Our patients may not have money for a bus ride to get to our hospital. They go to 10, 15 different health care clinics and hospitals,” Dr. Elmore said.

Open access has also shown potential benefits for patients with more organized plans of care, such as those treated at MD Anderson. In a sample week last year, more than 5,000 patients and over 200 non-Anderson physicians used the records system, logging in about three times on average. “The growth has been phenomenal,” said Larry C. Driver, MD, a pain medicine specialist and chair of the hospital's medical records committee.

Advocates of patient access list a number of reasons why these programs should be encouraged to grow. “It could be a relatively simple way for patients to know more about their care and to be more engaged in their care,” said Ms. Walker.

Improved compliance is another potential benefit, according to both experts and Linda Johnson, a patient at Harborview who participated in the study. She used the system to see the results of her frequent lab work and to remind herself of her physician's instructions. “I don't have to go through hoops to find out what happened, or follow up if I forget a lab report or what I'm supposed to do,” she said.

The record access also allows patients a chance to double-check information and note if physicians enter something incorrectly.

“They can see things that aren't right and discuss it with the practice,” said Brian Fisher, MBBCh, a primary care physician in London, England who has provided and studied open access. “It makes care safer and it makes care more efficient.”

Not all primary care physicians are so convinced of these benefits, however. In the Annals study, more than 90% of the 30,000-plus surveyed patients thought open records were a good idea, compared to 69% to 81% (depending on the study site) of the physicians who volunteered to have their records opened. Physicians at the same facilities who didn't participate in the project took an even dimmer view of it; only 16% to 33% thought it was a good idea.

“They're concerned about whether this is a good idea for their patients: Is this going to affect their relationship with their patients? Is it going to confuse patients? Will it make patients worry?” said Ms. Walker.

“The second thing they are worried about is what this will do to their own workflow,” she continued. “Are patients going to bury me in questions on the phone and in email?”

Dr. Fisher added some additional concerns to the list. “There's a worry that it will increase litigation,” he said. “There's a worry that people will see things they shouldn't see.”

Since the one-year pilot just finished, the researchers don't have definitive conclusions about the effects of open access, but the anecdotal reports are positive. Only one physician quit the project during the year.

“As a measure of success, having only one physician drop out of the program is a very good sign,” said Jonathan Darer, MD, a study coauthor and chief innovation officer at Geisinger.

Comments from physicians during the study also indicated that their pre-pilot concerns were not being borne out.

“For the providers who participated, the overwhelming sentiment was, ‘I really don't think anything is happening. Are you sure you turned it on?’ The impact to most providers was negligible in terms of increased workflow or time spent in the office or even impact on the way they do their current work,” Dr. Darer said.

To allay physicians' concerns, most initiatives have built in some protections. For example, Dr. Fisher's system allows physicians to block patients from seeing parts of the record. “It's actually possible for a practice to restrict patients' access to free text so patients only see the safe part of the data,” he said.

The OpenNotes system granted participating patients complete access but gave physicians the option to exclude some of their patients from the program.

“The topics that always come up as possible special cases are substance abuse, mental health issues, cancer and obesity,” said Ms. Walker.

MD Anderson's system has dealt with some of the same areas of concern by not providing access to certain parts of the record, including social work, chaplaincy, psychiatry and neuropsychology. The system also delays reporting of certain information that designers thought was best conveyed and interpreted by physicians.

“There's a seven-day hold on diagnostic imaging, on laboratory results and on pathology results,” said Dr. Driver.

Such limitations may reduce the impact of the system on current inpatients, Dr. Driver noted, although they are also invited to use the system. “If they have a laptop computer in their room, they could [access it],” he said. But the test-result hold means that patients will have to get some of their information the old-fashioned way, he added. “They're going to have to rely on their team that's rounding.”

Patients who do access their records may also share them with their family or other caregivers, which is both an advantage and a risk of the system. “There were some anecdotes about caregivers who would print out information for patients who could read it at their leisure,” said Dr. Darer.

The risk of such shared access is that privacy could be compromised. “A member of the family says, ‘What's your login? I'll see when your next appointment is.’ That person gets access to the record, gets access to everything,” said Dr. Driver.

It is challenges like these that motivate the gradual implementation of open access, experts said. “We have a lot of work left to do. It won't happen flicking on a switch and I think that's appropriate,” said Dr. Elmore.

But in the United Kingdom, the switch was effectively flipped on open access recently. “The U.K. treasury said that all National Health Service patients should have access to their primary care records by 2015. I would guess by 2020 this will be a normal part of life,” said Dr. Fisher.

There's no deadline for implementation in the U.S., but experts expect open access will soon be coming to a health care system near you anyway.

“It's a question of not if, but when,” said Dr. Elmore.