Worth Noting

Patient safety and compliance will benefit from the new movement to make medical visit notes available to patients.

By Podge M. Reed Jr.

As a bilateral lung transplant patient at Johns Hopkins, I was very excited in May 2013 to gain access to portions of my electronic medical record through MyChart. Over the past year, I have used it on a weekly basis. The program sends me email notifications informing me of upcoming appointments, test results and incoming messages from my various providers. In addition, it allows me to send messages to my providers. 

Given my transplant history, I use the test results information frequently. I know that results will be available to me four days after a lab test or a radiology procedure. (The four-day delay gives my doctors time to see the results first—and to be in touch with me if they see something that could be particularly alarming.) While I currently can access more than 500 outpatient test results, I have learned how to structure the data to provide me with summary information so that I don’t get overwhelmed. These summary reports allow me to track my bumps in the road, i.e., rejection drug levels, kidney stress, etc. Knowing how my different medications and what I eat can impact my test results, this information helps me stay compliant with my treatment plan—and figure out what I might be doing wrong to cause a variance in the test results.

Based on the success of MyChart, I’d like to see Johns Hopkins Medicine take the next step by embracing OpenNotes—a national initiative to give patients access to the visit notes written by their doctors, nurses or other clinicians.

Currently, when I leave my doctor’s office at Johns Hopkins, I do receive a written discharge summary, which includes my active problem list, medications, orders for tests, a list of all my future appointments and follow-up time frame. While helpful, the summary does not contain anything that my physician may have discussed with me during the visit or any special instructions given to me. From my perspective as a patient, it is a semicomplete discharge summary.

OpenNotes would fill that void. There’s an initiative now underway at Johns Hopkins, led by rheumatologist John Flynn, to add OpenNotes to MyChart, and I heartily support it.

As a patient, I know that I have a legal right to access my medical record, but that requires a formal written request to Johns Hopkins’ Office of Medical Records and Privacy Information and a delay in receiving the information. By having access to OpenNotes in MyChart, I can review those notes on a timelier basis and make sure I understand and comply with my physician’s instructions. In addition, I may discover that I forgot to ask a question that I had about my care. Through MyChart, I can ask the question without having to wait for my next office visit. 

Based on a presentation I recently attended at Johns Hopkins, the initiative does appear to be making an impact. Jonathan Darer, chief innovation officer for Geisinger Health System, spoke to the Johns Hopkins Clinical Systems Advisory Committee, reporting that patients with access to OpenNotes had improved compliance. He further testified that studies showing more than 50 percent of the patients with access to OpenNotes had reviewed all of their office progress notes, while more than 80 percent reviewed at least one note.

I realize some health care providers are apprehensive about giving their patients access to office visit notes. Perhaps they worry about offending patients—with references to them being “morbidly obese” or “noncompliant,” for instance—or that it will take more time to write notes in a way that patients can understand—without abbreviations, for example.

I can understand this apprehension. But I strongly believe that the benefits to patient safety and compliance outweigh any potential challenges. I am confident that adopting OpenNotes will go a long way toward helping Johns Hopkins Medicine achieve its Strategic Plan goal of being “the national leader in the safety, science, teaching and provision of patient- and family-centered care.” 

Podge M. Reed Jr. is a lung transplant patient and active member of The Johns Hopkins Hospital’s Patient and Family Advisory Council.