Cancer survivor-turned-researcher advocates for patient access to medical notes
In 2005, the number of internet users reached 1 billion. In 2007, the first iPhone was introduced. In 2008, Liz Salmi was diagnosed with cancer.
These events may seem unrelated, but they were pivotal in setting Salmi on her unusual path to becoming a prominent woman in oncology.
“I am incredibly curious, and I happened to become a patient during a confluence of increased access to health information for patients, the proliferation of new media for patients to connect and share experiences with each other, and a boom in access to information about every aspect of our lives,” Salmi, who serves as senior strategist for research dissemination for OpenNotes, said in an interview with Healio. “Of course, I didn’t know this was happening at the time.”
Inspired by new technology, Salmi said she decided to put her background in digital communications to work for her fellow patients with cancer.
“I have always been fascinated by making complicated things easier to understand using the language of the day,” Salmi said. “Fifteen years ago, USA Today’s ‘charticles’ were cutting edge. Today, we communicate in memes. Communication is constantly evolving alongside technology and how people consume information.”
In her role for OpenNotes — a movement dedicated to promoting transparent communication among patients, their families and clinicians — Salmi educates hospitals and health systems about ongoing changes in patient access to their medical notes. These changes are associated with the 21st Century Cures Act’s Interoperability and Information Blocking Rule, which allows patients to view their progress notes without delay.
“As a person who has received a cancer diagnosis, I know that when you get that news, it’s shocking and overwhelming,” Salmi said. “Numerous studies have shown that when people hear this kind of news, most might remember 30% of the conversation.”
For this and other reasons, Salmi believes that patient access to their medical notes ultimately will benefit both patients and providers.
“When patients can refer back to the notes the doctor wrote about their visit, they feel more involved in their care,” Salmi said. “They feel more prepared for their next visit. They’re more likely to follow their clinician’s advice and they end up trusting their doctors more.”
Salmi was diagnosed at age 29 years with a malignant brain tumor. She later became a patient advocate and researcher, authoring several papers on open notes and other oncology topics.
“I cut my teeth by working alongside clinicians and researchers in the nonprofit space, and eventually learned the lingo of how things work in health care,” Salmi said. “My work as a patient-researcher has all been on-the-job training, which is incredibly rare. I am truly lucky.”
A patient first
Although concerns have been expressed about open notes causing confusion and fear among patients, there is substantial evidence that they benefit patients, according to Salmi.
“There will be a small percentage of folks who will say, ‘I felt more worried,’ but many patients want the option to read their notes,” she said. “One thing about living with cancer is that in many ways, you feel as though you aren’t in control of so many things. Being able to access your own medical notes gives you a little semblance of control.”
After Salmi was diagnosed with cancer, she quickly began devoting her time and skills to patient outreach. She wrote blogs describing her daily symptoms and explored the parameters of her electronic medical records.
Salmi said she finds it fulfilling to help health systems prepare for open notes. However, she said her top priority will always be her fellow patient.
“For better or worse, I will always look at things through a patient lens first,” she said. “I ultimately think clinicians are going to see the benefits of this. But I will always relate to the perspective of other patients with cancer, the people who live with these diagnoses. These are my people.”
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Liz Salmi can be followed at @TheLizArmy.