Last month in Healthcare news, a patient advocacy group called “OpenNotes.org” received the “Health Data Liberator” award for expanding the sharing of information between doctor and patient. OpenNotes has been working since 2010 to encourage doctors to open their internal notes to patients. An initial study published in 2012 allowed 20,000 patients to view detailed notes recorded during and after a visit. The study concluded that for little to no effort on the part of the doctor, patients gained better understanding of conditions and treatment plans, and generally realized a better sense of control of their health. The program has expanded rapidly, now with over 14 million patients in 37 states having gained access to their doctor’s notes.

A Mishap

I had not seen notes from my doctors prior to an incident two months ago. I had ordered a bedroom dresser that my wife and I had been wanting for a while. As a do-it-yourself-er (and being too cheap to order the full delivery and setup), I received the shipment, and immediately attacked the packaging material to free the dresser from its container. Using a utility knife, I snipped through straps, tape, cardboard, padding, and wrap. As I tried to lift the dresser free, I lost my grip, and a corner support snapped my thumb backwards. Searing pain! After a while, the pain subsided, but my thumb hurt every time I moved it.

Normally, I would have simply immobilized my thumb and iced it a few times. But at this particular time of year, I had an upcoming ski trip to Copper Mountain the following weekend. I hoped I hadn’t ruined one of my few chances to ski. I decided to visit urgent care to make sure there was no major damage.

The Visit

Fortunately, there was no wait at urgent care, and I got right in. This was my first-ever visit to this clinic, so it took about 10 minutes to get registered before being led back to an exam room. Before long, I was seen by the Physician Assistant (PA), who was professional and efficient. After a thorough exam of my thumb, hand, and lower arm, she concluded that I sprained my thumb, and I likely needed just a week of immobilization to achieve a full recovery. Skiing might still be an option if I was careful for the week.

A few days later, I checked the patient portal to remind myself of the PA’s instructions to maximize the healing process. Fortunately, the urgent care facility signed on to OpenNotes.org, the group I mentioned above that facilitates information exchange between doctor and patient.

Records Available on the Patient Portal

Before I reveal the doctor notes, let me first show the scant information typically available without doctor notes. While most medical facilities provide patients access to their records from a patient portal (see High Expectations for Personal Health Records), the information itself usually only contains high level summaries. The typical patient portal reports the incident like this:

I think it’s great that the US Government continues to encourage patient access to health records, but believe it or not, this paltry detail is all that’s required for a doctor to conform to government standards.

Rich Records in OpenNotes

Now, let’s look at the doctor notes for this incident to see the extreme difference in detail that OpenNotes is advocating:

As you can see, the notes contain detailed observations of the attending PA during her examination of my thumb. Notice the medical jargon like UCL, laxity, AVS, and RICE. The notes are obviously written with a medical audience in mind. I don't know these terms, but better understanding is just a Google search away. The notes also include detailed care instructions, which appear to be “boiler-plate” from a library of medical instructions. These are very readable, with no medical industry jargon. The difference in detail between the typical patient portal information, and the OpenNotes, is dramatic. OpenNotes creates a much richer record of the episode than what is otherwise available to patients.

Why Not OpenNotes?

Traditionally, doctors recorded notes to communicate conditions and treatment plans to facilitate continuity of care. The note would later help recall the details of a case. If you were to see another doctor for any reason, that doctor could quickly learn the details of your case, and thus be better prepared to treat you. The notes were not intended for patients, and indeed, in some cases, notes of a personal nature may be cause for some embarrassment. “Mr. Jones is a portly, yet kind man”, or, “Mr. Smith presented a surly attitude during the encounter”. Some doctors feel that keeping the notes private encourages better documentation. A doctor wants to fully document clinical information without having to consider the feelings of the patient. The willingness to share notes is far from universal among practitioners.

But the benefits to patients is self-evident. You now have a detailed, professional account of your condition and treatment plan. You no longer have to rely on memory to recall your treatment plan and medication schedule. Imagine if you are helping care for a loved one. If you are unable to attend a doctor visit, these notes would be invaluable to understand a condition and treatment instructions for your loved one.

You Can Help

There is something easy that each of you can do to help the OpenNotes movement. The next time you visit a health care facility, please ask your doctor for the notes, and ask your family members to do the same. Increased awareness and additional interest from patients will help move the OpenNotes.org towards becoming a universal part of the healthcare experience. Healthcare is not getting cheaper, and the supply of physicians, PTs, nurses, and PAs is barely keeping up with demand. As the use of OpenNotes grows, this simple solution may be one factor in improving care and reducing costs in the Healthcare industry. As a well-informed patient, you can help implement instructions with a deeper understanding of your condition and your doctor’s intent. This will decrease the need to visit your doctor or the hospital again for the same issue (reduced readmissions, in Healthcare terms). Also, if you collect your notes, you will have your complete health story in your possession. You won’t have to worry about the many reasons providers may lose, misplace, or delay delivery of your records according to your wishes.

Summary

OpenNotes help you recall what your doctor said during a visit and help you take your medication at the right times. And if you have loved ones, you can see what the doctor has to say, rather than relying on your loved one’s memory of the encounter. Doctor visits can be stressful, and under stress, we all tend to forget details. In the end, having access to the notes helps you understand your condition and follow the instructions from your doctor. This improves your chances of full recovery without any additional cost to the medical system.

You might be wondering how my thumb fared for skiing. It was a glorious blue sky day in the Colorado mountains, about 20 degrees and sunny, which in the Colorado mountains, feels like 45. My thumb? I fared pretty well – still had some soreness, but I was able to grip my ski poles without much pain. And the new bedroom dresser? Well, it looks great and gives us much more room for clothes. Now I just need to slow down my wife’s pace of filling the drawers with new clothes!

Ask Your Doctor for the Notes!