Like hospitals, patient engagement shouldn’t shut down on holidays. On the other hand, good patient engagement is so hard to find on normal days.
Whitney Zatzkin, a chronic asthma patient in Northern Virginia, had to drag a physician and the head nurse at her local asthma/allergy clinic into what she called a “reverse grand rounds” this week.
“I’ve been miserable for 7½ weeks, Zatzkin told MedCity News on Wednesday.
About two months ago, Zatzkin went to that clinic for a regular allergy shot. About a week later, she had an allergy-related asthma attacks, so she called the allergist’s office. The person who answered the phone instructed Zatzkin to go to her primary care physician for acute asthma outbreaks, which she found odd.
“I was informed that they no longer see asthma and allergy patients when they’re having an episode,” Zatzkin said.
Zatzkin happens to direct Flip the Clinic, a program sponsored by the Robert Wood Johnson Foundation that aims to change the culture of healthcare to make doctor-patient interactions more meaningful. She fits the mold for someone who craves patient engagement.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
The system has clearly failed her of late. She has seen her primary care physician three times in the last seven weeks and been through two courses of antibiotics. Zatzkin got one set of antibiotics as well as a nebulizer through a friend who happens to be a nurse and whose daughter happens to have asthma.
That was a bit of a patient safety risk, but one Zatzkin was willing to take. It did at least prevent an expensive trip to the emergency room. “There is definitely an ER component” to her travails with a practice that didn’t seem to want to take responsibility for her treatment, Zatzkin said.
Finally, this week, Zatzkin convened the “reverse grand rounds,” briefing the allergist and a nurse about the inattentive care. “Every time they thought it was the worst part of the story, they paused and said, ‘We’re sorry,'” Zatzkin related. But the story got worse as she continued to the part where she came down with bronchitis.
During the office visit this week, at least Zatzkin got data on her lung function and was able to chart a recovery path. She said that some metrics are down about 15 percent from normal, “but now I know I can push myself a bit more and where I am headed.”
She said the practice has been through two mergers in the last couple of years and is getting ready to launch its third electronic health records system in January. Patient engagement apparently has gotten lost in the shuffle.
The doctor and nurse promised to do better and to be more attentive to her care. That isn’t good enough.
“I don’t want to be on the VIP list,” Zatzkin said. “I want everybody to get this.”
In other news on the patient engagement front, “E-Patient” Dave DeBronkart is still fighting for “my damn data.” When we last checked in, deBronkart had called out Beth Israel Deaconess Medical Center CIO — and MedCitizens contributor — Dr. John Halamka at MedCity ENGAGE for the latter’s statement that “not one” of the 2 million patients at the Boston Hospital “had ever requested a download” of their medical records.
DeBronkart himself is a patient at BIDMC, and he said he has requested a download on multiple occasions.
In the last few weeks, Halamka and deBronkart have been going back and forth on their respective blogs. On Nov. 7, deBronkart wrote, “Stop saying patients don’t want this. ENABLE it.”
Two days later, Halamka blogged that BIDMC was in fact about to turn on the “data spigot” that deBronkart has long advocated for. That will be in the form of an iOS app developed on Apple’s CareKit platform.
Here’s how Halamka described the app, called BIDMC@home:
Every patient has a customized care plan that is seamlessly synced from the electronic medical record via FHIR interfaces. All outpatient medications are listed and updated in real time when a provider makes a change. Patients are encouraged to adhere to their prescribed medication regimen and can also track their intake of “as needed” medications. Providers define a care plan of non-medication activities that are part of a patient’s treatment. These may include diet, exercise, or special instructions.
It leans on the Fast Healthcare Interoperability Resources (FHIR) interoperability standard. It also relies too much on Apple for deBronkart’s tastes.
This week, deBronkart posted again, addressing Halamka directly.
iOS is a minority of the citizen user base. Surely you know this [emphasis in original].
John, you say you’re developing an iOS-based solution, which will offer users the data you believe they need. I have two problems with this.
1. Who are you to decide? That’s what’s known as paternalism: “You don’t know what’s best – I do. I’ll decide for you.” What about patients with real medical problems, whose needs are different from your middle?
2. iOS is a small share of what people actually have. Everyone else’s needs are in no way served by an iOS solution.
On the second point, deBronkart showed a graphic from research firm IDC illustrating that Android has enjoyed about an 80 percent share of the smartphone market since at least the middle of 2013. He did note that Apple iOS does account for 40 percent of smartphone sales in the U.S., but Android still leads comfortably.
So the patient engagement struggle continues. Patients are trying to be empowered and for healthcare organizations are yearning to understand what patients really want.
Photo: Bigstock
