On November 2nd, 2020, something really exciting will happen in this country–and it has nothing to do with elections.
A law that gives patients free access to their complete medical record will be taking effect.
Patients may not be aware of this, because the law, a provision of the 21st Century Cures Act, was passed in 2016. But hospitals and clinics are aware. Why? Because as of November 2nd, they must provide patients access to all the health information in their medical records or face steep fines. There are very limited reasons for not sharing notes; feeling that a patient “cannot handle it” is not one of them.
Records that must be provided include clinic notes, discharge summaries, labs, pathology reports, procedure notes and progress notes from hospital stays, among others.
Although not all of my colleagues agree with me, I happen to think making medical notes accessible to patients is an excellent idea:
- It helps patients feel more in control (always a plus in a system that can make a patient feel quite helpless). Information is power. Having more information helps patients make better decisions.
- It can be hard to remember what the doctor has said at a clinic appointment.
- It makes patient care safer. Sometimes inaccuracies creep into the medical record, and it is important to get them corrected: an incorrect dose for a medication, a part of the past medical history that isn’t quite right. Having access to the record gives the patient a chance to bring these things up with their doctor.
- It helps families coordinate care if there are multiple caretakers of a parent or family member. Everyone can be on the same page.
- Sometimes the doctor thinks of things that need to be done after a clinic visit, and mentions those in the note but forgets to tell the patient. So it can be very helpful for the patient to be on the same page about next steps and know what the plan is going forward.
- And finally–it’s the patient’s right (and a federally protected one).
Do patients and doctors like it? Some doctors were initially skeptical, according to Dr. CT Lin, chief medical information officer at UC Health in Colorado and a big fan of shared notes: “It has [historically] been the view of some in healthcare that notations made by physicians are for themselves or for other doctors. It’s too dangerous for the patients, clearly, to know anything beyond what pill to take. This paternalistic view has existed for a long time,” he writes.
Fortunately, in a small pilot study that Lin spearheaded, doctors reported little or no increase in workload, although many had expressed that concern. Indeed, one of my colleagues said he felt sorry for overburdened primary care docs, and the numbers of calls they may now receive. But that has not been the case in studies of shared notes, according to Dr. Charlotte Blease, who works at the nonprofit Open Notes.
Patients were uniformly enthusiastic, with 99 percent wanting to continue the program after the study. Interestingly, no doctor asked for the notes to be turned off. While some physicians were concerned that patients would be confused by the notes, few patients in the study reported that. The majority reported feeling more in control of their health.
Why? It’s easy to forget some of the things discussed during a medical visit, and it’s far too easy to recall things incorrectly. Having the doctor’s notes to refer to gives patients peace of mind. This may be even more true now, with COVID-19 limiting the number of people able to attend in-person or telemedicine visits. This is particularly difficult for the patient who needs a family member or friend there to help them remember what was said.
Some oncologists have worried that patients may learn about a cancer diagnosis from a pathology reading before they have a chance to discuss it with their doctor. In Colorado, some clinicians are starting to do pre-test counseling–letting patients know that cancer is a possibility before they have a procedure. In California, physicians must discuss pathology results with a patient before they are released for the patient to read. That a patient may misinterpret a result is a legitimate concern. I have observed at least one patient misunderstand a normal scan reading that they read in the medical record. I think the best way to address it is to ask the patient if they have questions about the tests they have had and to go over x-rays and other scans with them.
Some physicians are finding they like shared notes as much as patients. According to a report in Medscape Medical News, Dr. Marlene Millen, an internist at UC San Diego Health, now ends all of her appointments with, ‘Don’t forget to read your note later.” Although she was at first a bit uncertain, the overwhelmingly positive feedback of her patients was a huge plus. She liked the fact that “it seemed to really reassure them that they were getting good care.”
Resources
For more information, see the Open Notes website.
There is a nice review article about the new law in Medscape Medical News.
Final Tips:
A few suggestions to patients:
- If available, register for your practice’s patient portal, if you are not already signed up;
- Read the notes from your last appointment before your visit and share the notes your doctor writes after the visit, if it is helpful, with others involved in your care. Reading over the last clinic note before your visit will help you and your doctor make better use of your time and address each medical issue systematically.
A suggestion for providers: even with the advent of shared notes, don’t assume that all patients will find it easy to read them–or even have access. It is still important for clinicians to communicate abnormal results that need to be acted on directly to the patient–and make sure that the patient has received the information. One patient who did have access to shared notes found the patient portal hard to navigate and information difficult to access and therefore didn’t know that several lab tests were abnormal. The patient went a whole year without changing medications and addressing an easily treated disease.
Photo credit: photo by Ben White, from Unsplash.com
