Should patients see their doctor's notes?
Giving patients access to their surgeons' notes is an almost unheard of practice and the idea generates uneasy feelings in the medical community. However, a recent study granted patients access to their primary care physician's notes and it had some surprising outcomes.
What would you do if a patient asked to view your notes on their care? The 1996 US Health Insurance Portability and Accountability Act made it a patient’s legal right to view and amend their records at any time1. Many doctors balk at the idea, while some counsel patients to take an active approach.
“The only real way to understand what happened in the operating room is to read the operative note dictated by the surgeon. Ask for the report” says Paul Ruggieri, MD.2
In fact, when the Open Notes trial3 asked 254 physicians in Boston, rural Pennsylvania, and Seattle if they would make their electronic record notes available to patients for one year, 114 initially agreed, and 140 declined to be involved.4
What, you may ask, deterred over half of the physicians from getting involved? Jan Walker, the study’s co-lead investigator, registered nurse, and health services researcher at Beth Israel Deaconess Medical Center commented that “most physicians were ambivalent at best.” Concerns about increased workload, misunderstandings and adding to patient stress were raised.
Will they want to continue?
Despite initial misgivings from doctors, the Open Notes study ultimately made 105 primary care doctors’ notes available through a secure online portal to 13,564 patients from the Beth Israel Deaconess Medical Center (BIDMC), Geisinger Health System (GHS) and Harborview Medical Center (HMC).
Study lead, Dr Tom Delbanco, a primary care physician at the BIDMC, commented that researchers were looking to answer one simple question, “After a year, will the patients and doctors still want to continue sharing notes?”
And the answer was overwhelmingly positive. At the end of the study 99% of patients wanted the practice to continue, and none of the participating physicians chose to stop.
Benefits of communication
The study reported that 11,797 patients (87%) opened at least one note. The number of patients who opened notes varied between study centers: 84% at BIDMC, 92% at GHS, and 47% at HMC. While only 45% of patients completed a survey on their experience, over 75% of respondents felt that it brought them increased feelings of control over their care. Surprisingly, 60–78% of patients across the three study sites who were taking medications stated that reading their doctor’s notes resulted in increased medication adherence.
Noncompliance is a serious issue. The New England Healthcare Institute (NEHI) suggested that, “an estimated one third to one half of all patients in the US do not take their medications as prescribed by their doctors.” In 2009 the NEHI estimated the cost of drug-related morbidity, including poor adherence, to be up to $290 billion annually – or 13 percent of total health care expenditures.6 Not to mention the frustration physicians feel when repeatedly addressing the same health problem only to discover their patient has not been taking their medication regularly.
Fears relieved
At the end of the survey physicians involved did not report excessive impacts. One even commented, “It was no big deal.” Initial concerns of causing undue stress, offence or confusion in their patients appeared to be of little consequence when 1–8% of patients reported this happening to them.
In addition, the number of electronic messages from patients to their doctors did not alter. In fact, 20–42% of patients reported sharing the notes with others, which indicates just how easy technology facilitates the sharing of information. Sharing notes as they were written assists patients when communicating health information with others in their lives: it is difficult to forget key points or alter what their doctor has told them, when the original text is right in front of them. Between 0-5% of physicians reported office visits taking longer, regardless of the size of their practice.
But a couple of things did take more time commitment on the doctor’s side. A quarter of physicians noted an impact in regards to altering documentation (3–36%) and taking more time to write notes (0–21%), however, being more thoughtful when writing patient notes can hardly can be counted as a negative impact.
Looking into the future
When looking into what the future may hold, physicians will be interested to learn that 59–62% of patients believed “they should be able to add comments to a doctor's note” and a third wanted to be able to approve the notes’ contents. Doctors disagreed: 85–96% did not want this to happen.
Inviting patients to be partners in their care isn’t going to be an easy transition for either side. All change takes time and encounters some bumps on the road. The evolution of healthcare to a more efficient and patient-centered system will be eased by clinically relevant gains such as improved medication compliance simply from reading doctors notes. It is an encouraging finding and a step in a positive direction.
Studies
