Show us the records: Increased access can improve patient care

A recent New York Times article told a story of a 26-year-old doctoral student at the Massachusetts Institute of Technology (MITO) who had been found to have a slight abnormality in his brain. After collecting an estimated 70 gigabytes of his own medical records and pushing doctors to conduct an MRI, the student had a tennis-ball size tumor removed from his brain. According to the piece and other recent studies, access to medical records could play an important role in forging a stronger bond between physicians and patients and improving health care overall in the future.

The student discussed in the Times article is named Steven Keating and, although–as the Times states–as a budding scientist he may be a particularly well-suited candidate to receive and view his own medical records, “doctors and medical experts view him as a citizen of the future.” Further, the Times explains, experts predict that “better-informed patients… are more likely to take better care of themselves, comply with prescription drug requirements, and even detect early warning signs of illnesses, as Mr. Keating did.” Yet, as the article notes, while some more advanced care centers are beginning to offer patients access to records, the overall field is a “medical culture resistant to sharing data, owing to tradition, business practices, and legal concerns.”

Two recent developments and reports on this topic each shed some light on the potential impact greater patient access to records could have on quality of care.

Open Notes

A report published online by BMJ offered some insights into the OpenNotes Initiative, which was a 12-month study conducted in three primary care locations—Beth Israel Deaconess Medical Center in Boston; Geisinger Health System in rural Pennsylvania; and Harborview Medical Center in Seattle, Washington. A total of 105 physicians participated in the study, through which over 19,000 patients were given access to their records. BMJ described how the study worked as such: “After a visit, the doctor’s electronic signature triggered a secure message notifying the patient the note was available. The patient could log on to the institution’s portal and read the note.” Additionally, the patient would receive another message to remind them to read the note prior to subsequent visits. The initiative found that more than 80 percent of the patients opened at least one doctor’s note and over two-thirds of participants “reported better understanding of their health and medical conditions, taking better care of themselves, doing better with taking their medications, or feeling more in control of their care.”

BMJ’s interpretation of these results indicates that while the initiative showed promise in terms of increasing patient’s access to records, more investigation is necessary to understand the dynamics of the use of these records by patients. “Although our experience suggests that open notes quickly becomes standard practice and requires little further attention, more evidence is needed to confirm whether transparent records help patients follow agreed care plans, medication regimens, preventive measures, or lifestyle changes.”

Blue Button+ Initiative

The Workgroup for Electronic Data Interchange (WEDI) recently conducted a survey to investigate the efficacy of the usage of the Blue Button+ Implementation Guide, which was launched by the Office of the National Coordinator for Health Information Technology in 2013 in an effort to encourage and aid patients in downloading their medical records online. According to WEDI, reliance on electronic health records (EHRs) as a means of populating personal health records (PHRs) was increasing thanks to the Guide’s usage in 2014. WEDI also noted that while private providers remained relatively constant in their use of EHRs, which allows for such access by patients, government use of EHRs increased significantly from 60 percent in 2013 to 100 percent in 2014. WEDI stressed the importance of increased knowledge of the availability of PHRs and explained that allowing access to an entire group, rather than a subset of patients, was key for increasing its usage and popularity among private providers.