On the other hand, some veterans were disturbed when they saw inconsistencies, previously undisclosed information, or derogatory language, said researchers.
The study showed that common provider concerns about giving patients full access to their records appeared unwarranted. However, the authors said, record sharing "is likely to change providers' work, necessitating new types of skills to communicate and partner with patients."
[ How is healthcare responding to federal mandates to educate patients? Read New Patient Engagement Guidelines Stress Electronic Tools. ]
The VA study was not large, involving only 30 veterans and six family members who participated in the MyHealtheVet pilot that the Veterans Health Administration ran from 2000 to 2010. But the focus groups in which the subjects participated were able to elicit some qualitative information that has not been captured in larger trials.
Among other things, the participants said that having online access to their medical records:
-- Was a valuable supplement to visits with their doctors, allowing them to remember what was discussed and avoid unnecessary phone calls.
-- Prepared them for office visits and enabled them to ask more intelligent questions.
-- Enabled them to show their VA records to local non-VA physicians.
-- Increased their knowledge of their health and encouraged them to do more self care.
-- Gave them more insight into their doctor's thinking.
-- Served as a starting point for Internet research related to their health.
-- Made them prompt their doctors about care they needed but weren't receiving.
On the negative side, the veterans' access to their records:
-- Increased their stress when they read detailed findings.
-- Made them aware that their doctors weren't necessarily being completely honest with them in face-to-face discussions.
-- Revealed to them what their physicians were really thinking about what caused their conditions.
-- Exposed derogatory comments about them in physician notes.
-- Showed them inconsistencies between the notes and what doctors said during visits.
On balance, the researchers said, the participants' views of how access to their records affected their health was overwhelmingly positive. "In all focus groups, participants put knowledge from their records to use by learning more about their health issues, gaining more knowledge about their providers' views, and advocating for themselves in discussions about their care."
The study noted that many doctors worry about giving patients full access to records. They're afraid it will cause distress and confusion among patients and increase work for office staff. The first concern is likely overblown, based on the study, the researchers said. As for the second, record sharing can actually decrease workload by reducing phone calls to clinics and requests for record copying. However, researchers said, "participants' experiences also challenge traditional roles for patients and physicians," which might lead to some uncomfortable conversations.
Two other studies shed light on these issues. In a recent Accenture survey, most U.S. doctors said they'd be willing to let patients update their medical records, but only 31% would be willing to give patients full online access to those records. And although half of the respondents said that allowing patients to view records online is crucial to improving patient care, only 21% of them were currently doing so.
A Harvard Medical School study referenced in the VA paper showed that most patients who participated in a one-year study of doctor-visit note sharing thought it was helpful and wanted to continue viewing their notes. Although note sharing had only a modest effect on physicians' workload, it prompted up to 36% of the participating doctors to change how they documented patient encounters.
In a baseline study done by the Harvard team a year earlier, between 25% and 40% of participating doctors at different institutions expected they'd have to change their documentation approach. The majority of doctors also expected the note sharing would confuse patients and increase their own workload, but neither of these concerns turned out to be a problem.
Regulatory requirements dominate, our research shows. The challenge is to innovate with technology, not just dot the i's and cross the t's. Also in the new, all-digital The Right Health IT Priorities? issue of InformationWeek Healthcare: Real change takes much more than technology. (Free registration required.)