Three of the scariest words in the English language are, “You have cancer.”
“You don’t hear anything after that,” said Dr. Avi Markowitz, chief of hematology and oncology at UTMB.
But thanks to a UTMB program called Taking the Message and the Medicine Home, the university is improving communication between patients, families and care providers. Developed by UTMB’s Oliver Center for Patient Safety and Quality Healthcare in 2009, the program provides patients with an audio recording of what the nurse, physician or other care team members say during their visit.
By bringing a recorder provided by the Oliver Center to appointments—or by using a mobile phone audio record feature—patients can capture what their provider has to say each visit. They can replay the conversation at any time to help them remember instructions and hopefully have a better understanding of what’s going on with their health during their treatment.
Today, thousands of recorders have been given to UTMB patients, said Dr. Meredith Masel, director of the Oliver Center.
What began in the Division of Hematology and Oncology is open to all patients, and the Oliver Center wants to expand the program.
“We’ve been working to get doctors to help identify patients who could really benefit from something like this,” Masel said. Charles and Kathy Morgan have seen the benefits of using one of the program-issued recorders.
Just over a month ago, Charles was diagnosed with colon cancer. And while Kathy is familiar with what goes into cancer treatment after having experienced it with another family member, it’s still been a shock nonetheless, she said.
Charles, Kathy and his daughter were at his first appointment.
“We thought the more ears we had the better,” Kathy said. “But even three sets of ears sometimes still isn’t enough.”
That’s because your emotions are high and you stop focusing, plus it’s hard to digest all of that information, she said.
That’s where the recorder comes in.
“Much of what we say gets lost at the time of the visit. A recording helps patients to better understand things like side effects and toxicities,” Markowitz said. “That way they’ll better understand why things are happening.”
Having that better understanding not only helps the patient, but it also helps the doctor as well.
“If we know they’re having problems, we can do something to help,” Markowitz said. “If I don’t know there’s something wrong, I can’t fix it.”
Kathy and Charles now bring their recorder along to every appointment with Markowitz. After each visit, Kathy will download the recording to her computer so she and her husband can refer back to it.
“We’ve referred back to it a few times when questions have come up,” Kathy said.
One example was information about a follow-up appointment: “I couldn’t remember if we were supposed to come back in a month and if everything looks good, then two months?” Kathy said. “But all I had to do was refer back to the recording and my answer was right there.”
Being able to refer back to a recording cuts back on calls to the doctor, Kathy said.
Charles said he would feel comfortable taking the recorder to his appointment if for some reason his wife couldn’t make it.
“It’s a great tool,” Charles said. “The only thing I wish is that I would have had it sooner.”
Now, Charles and Kathy are becoming advocates of the program to their friends and family.
“I’ve always encouraged friends and family to bring something with them to take notes at their appointments,” Kathy said. “But this makes it that much easier—and our doctor handed it to us!”
Markowitz has been thrilled with the response his patients are giving him about the program and looks forward to giving other patients access to this resource.
“It’s just one more way we can empower patients to understand that they play a specific role in their care,” Markowitz said. “And that’s truly invaluable.”