After dating me for only 18 months, my now husband became my health care partner. I was 29. He was 31.
In mid-2008, I suffered a massive seizure, landed in the ER, and a scan revealed I had a mass in my brain. Brett suddenly found himself in love with a 29-year-old gal with brain cancer.
After my first hospitalization, Brett jumped into caregiver mode. If I needed clothes for the hospital, Brett packed the bag. When a nurse missed one last stitch in my scalp, Brett finished the job with tweezers. When I needed help coordinating a complex regimen of medications, Brett designed a color-coded spreadsheet that matched my giant pillbox organized by days of the week and times in the day.
Meanwhile, I jumped on the Internet to research treatment options on PubMed, joined Facebook Groups and Twitter communities for people with brain tumors, and started blogging about my experience for family and friends.
There is no right way to respond to illness. My way was to respond with curiosity. I cared about understanding the how and why of my diagnosis and the what of my treatment. Brett’s way was to respond with unconditional love and support. And he cared about taking care of me.
But there is one thing we both needed and continue to need to be active and engaged participants in my care: access to the details of my ongoing care plan—information that is a part of my medical record and embedded in my doctor’s notes.
Brett and I didn’t even know notes were a thing until earlier this year when a change in health insurance forced me to uproot my care from one health system to another. While in the process of collecting my medical records I stumbled across a large PDF document that revealed an insider’s view of my last eight years of living with brain cancer—my notes.
Doctor’s notes (or visit notes, progress notes, clinical notes) are the most important information in our record. This information is readily available to doctors and other members of the health care team to remind them about a patient’s condition and plan for care.
I received great care from my previous health system, but like 96 percent of Americans, my clinical notes were not shared through the online patient portal. This made me wonder… why hide my notes?
I want this to change—for me, for my husband, and for every patient facing a health challenge or working to stay well.
OpenNotes is a national movement encouraging doctors, nurses, and other health professionals to share the notes they write with the patients they care for using secure, patient portals, with the ultimate goal of improving the quality and safety of care. Shared notes enhance the patient experience by improving communication and trust, and reading notes helps to empower patients to make more informed decisions.
Access to notes can help caregivers like Brett, too. In a 2016 study*, patients and care partners with access to open notes stated that they had better agreement about treatment plans and more productive discussions about their care, and patients were more confident in their ability to manage their health and felt better prepared for office visits. Even better, care partners reported improved communication with patients’ providers at follow-up.
In less than five years, the OpenNotes movement has grown access to notes from 20,000 to over 15 million people. That number is impressive, but it represents just 4 percent of the U.S. population.
When I, the patient, don’t have access to notes, neither does Brett—the person most invested in my care. I spend about two hours each year with my health care team, and over 5,000 waking hours in self-care or “Brett-care.” Access to my notes could help us remember what we need to do between now and the next appointment with my doctor.
So what’s the hold up? Why don’t more people have access to their full medical record and clinical notes?
Doctors and health systems claim people will not understand their notes, or be afraid of what is written in them. This makes no sense to me. I am already looking for information about my diagnosis on the Internet—shouldn’t my first search be based on information in my own medical record?
My husband and I are the most invested people in my care, and the notes are about me. Any information about my health and health care is important to us, and we want to know about it. We can handle it.
* Wolff J, Darer JD, Berger A, et al. Inviting patients and care partners to read doctor’s notes: OpenNotes and shared access to electronic medical records. J Am Med Inform Assoc (2017) 24 (e1): e166-e172.
Liz Salmi is the Senior Multimedia Communications Manager for OpenNotes. OpenNotes is a foundation-funded national movement advocating for clinicians to share their visit notes with patients via patient portals. She is also a patient who does not have access to her notes.
To hear more from Liz and about OpenNotes, join us August 29th for the upcoming webinar, The Power of Knowing. You will learn more about the OpenNotes movement and how your health system can participate, and hear from a doctor and a patient about their personal experiences with notes and transparency.