AIM feature: Docs, patients differ on sharing medical information

The migration from paper charts to EMRs offers the opportunity to provide access to patients, consultants and other caregivers. Electronic records also offer potential for greater transparency, improved efficiency and decreased costs. However, some think that sharing doctors’ notes electronically could lead to greater patient confusion and more work for the physician. Two articles published in the Dec. 20 issue of Annals of Internal Medicine use survey data to shed light on both sides of the issue.

In the first article, 173 primary care physicians (PCPs) and 37,856 patients completed a survey before joining a voluntary program that provided electronic links to physician notes. The purpose of the survey was to ascertain attitudes from PCPs and patients toward the potential benefits or harms of the program.

The researchers found that PCPs and patients had contrasting opinions on EHRs. The PCPs that chose to participate in the program did so because they thought EHRs would improve patient safety and satisfaction, and could lead to patients being better informed and taking better care of themselves. The PCPs who declined to participate did so because they anticipated increased demands on their time during and between visits. Moreover, many feared that open notes could frighten or confuse patients, especially if the PCPs wrote candidly about sensitive health issues. In contrast, patients were enthusiastic about open notes and had little concern about the consequences.

In the second study, researchers conducted a web-based survey of 18,471 patient users of My HealtheVet, the electronic personal health record (PHR) of the Department of Veterans Affairs (VA), to explore preferences about sharing electronic health information.

The researchers found that four out of five veterans surveyed were interested in sharing access to their PHR with someone outside their health system (a spouse or partner, child, other family member or a non-VA healthcare provider). Thus, the researchers suggested that future research focus on whether shared access to PHR could reduce the burden of long-distance care-giving and improve communication among multiple care providers. The challenge is providing a system that maintains patient security and privacy at the same time.

Voice of experience provides response
In an accompanying editorial, Thomas W. Feeley, MD, and Kenneth I. Shine, MD, both of the University of Texas Health System in San Antonio, noted that both surveys were done in advance of implementing any actual record sharing. “Why such caution?” the authors wrote. “Current electronic technology makes it possible not only to enable patients to view their own record but also to grant permission for others to see it, be it a family member, a caregiver or an involved provider in another location. Such sharing of information could greatly improve communication, engage patients in their care, and help them formulate questions in advance of a visit on the basis of prior notes and test results."

The University of Texas MD Anderson Cancer Center in Houston uses its EMR and a secure web-based portal to provide access to patients and their referring physicians. Since the system went live in May of 2009, few physicians have complaints, the authors wrote. To date, 84 percent of active patients have obtained access to their electronic records and more than 1,300 referring physicians have accessed the records. “There have been no adverse consequences and generally positive feedback from both patients and physicians,” Feeley and Shine reported.

In an interview, Shine said that for an open notes program to be successful, “it is critically important that physicians be part of the process. Of particular importance is working out details as to what information you will not immediately make accessible.” At MD Anderson, the decision was made early on that everything would go into the electronic record immediately with the exception of procedures or test images that produce a diagnosis about the presence or spread of cancer. “We said that there should be a one-week delay and that the physician responsible needed to communicate directly with the patient. We didn’t want patients learning about a diagnosis of cancer or a recurrence by looking at their EMR without the opportunity for explanation.”

Patient utilization is very high, Shine said, and points out that numerous open notes initiatives have resulted in improved patient care. “There is an abundance of evidence that says that access to records improves care. These two papers document what we’ve known for a long time. The importance of these papers is the interest patients have in sharing this information. It wasn’t just about patients having access to their records.”

The EMR is going to be a part of 21st century medicine and health, Shine asserted. “It’s understandable, when confronted with this, that physicians would have questions and concerns about whether this kind of access will be more time-consuming for them and that it will somehow lead to more lawsuits. We have not found any of those to be major issues.”

In fact, at one University of Texas facility, Shine noted that less time is required of physicians now that this material is available. “Patients can get questions answered without asking their doctor.” Physicians are anxious about open notes but they can adjust to it, he added. “Any kind of change produces anxiety when you don’t know what the outcomes will be. But, in our experience, putting these records out there is overwhelmingly beneficial. The number of problems for physicians is relatively small.”