A growing number of patients record their conversations with doctors. Here’s why.

At 30, Steve Giallourakis, has had more experience with the healthcare system than most people have in their lifetimes. Giallourakis, a patient advocate who lives in the Cleveland area and is currently finishing his bachelor’s degree in advanced mathematics, was diagnosed with his first cancer when he was 15. He recently had surgery that successfully removed portions of one of his kidneys, part of the treatment for his fourth cancer.

One of the most stressful and disorienting periods in his 15-year odyssey came last September. Over the course of about a week, he bounced between hospitals, doctors, and nurses, going from dermatologists to oncologists, hospitalists and urologists, all the while undergoing CT scans, MRIs, biopsies and other procedures that eventually uncovered cancers No. 3 (undifferentiated pleomorphic sarcoma) and No. 4 (renal cell carcinoma).

For much of it, he felt disoriented and confused. And while he did his best to self-advocate, he wasn’t always able to do so successfully. “I was in so much pain, despite being on extremely hard-dose narcotics,” Giallourakis says. “I would have loved to be able to listen to things I was told. My parents were there, but we were all in a haze.”

While his situation may be extreme, millions of people experience a version of his problem: It’s hard to remember much of what doctors say.

“We know from research that our ability to retain spoken information is limited, especially when someone is speaking to you quickly and in technical language, and especially when you are anxious and receiving bad news,” says Dr. Glyn Elwyn, director of the Dartmouth Institute for Health Policy and Clinical Practice.

Indeed, studies show that patients forget between 40% and 80% of the medical information they receive from practitioners. The consequences can be serious and range from patients inability to follow care instructions to their fundamental misunderstanding of the risks of various conditions and treatments.

“Studies show that patients forget between 40% and 80% of the medical information they receive from practitioners."

We started Abridge, which allows people to record conversations and creates a transcript of medically-relevant information, to help patients overcome those problems.

But even before Abridge was born, patients started taking matters into their own hands, often using their smartphones or other devices to record their conversations with doctors so they can later review what they’ve been told. Some do so openly, with their doctor’s consent. Others do it surreptitiously, which doctors and most patient advocates discourage. Dr. Elwyn estimates as many as 15% of patients may already be recording interactions with doctors.

In a sign of changing norms, a growing number of healthcare providers not only tolerate the practice, but also encourage it—betting that giving patients the ability to review conversations at home and share them with their loved ones will ultimately improve care. The University of Texas Medical Branch, for example, has long promoted the use of recordings, going as far as donating recorders to those who don’t have them. We recently started working with the University of Pittsburgh Medical Center to encourage patients to use Abridge to record doctor visits in telemedicine settings, which have become the norm during the Covid-19 crisis. We’re also beginning a pilot program with Boston Children’s Hospital in which physicians will encourage patients to use our app to record conversations.

“As many as 15% of patients may already be recording interactions with doctors."

The goal, says Harvard Medical School professor and Boston Children’s Chief Information Officer John Brownstein, “is putting the power in the hands of patients.” Dr. Brownstein says the ability for patients to review conversations at their own pace and to go over discharge instructions will have significant benefits.

Doctors could be better off too, he adds, because they’d be able to use their time with patients more efficiently, without having to repeat themselves to ensure patients absorb the information they’re sharing. “It’s one of those rare circumstances in digital health where it is a win for everyone,” Dr. Brownstein says. “We’re incredibly optimistic about it.”

Patients who have embraced recording say it has vastly improved their experience. “It was life changing,” says Robbin Nelson, whose 25-year-old daughter recorded a series of visits ahead of a surgery to remove a kidney stone so she could share them with her mother. Nelson, who has worked in the healthcare field for decades, helps her daughter with medical and financial decisions around her care. “It felt like I was there at the appointment,” she said. “Her clinician is a wonderful physician, but he speaks clinically. If she remembers a medical term even a bit differently, it could mean something else entirely, and I wouldn’t be able to advise her on what to do.”  

“Patients who have embraced recording say it has vastly improved their experience. ‘It was life changing.'"

John Samuels, the founder and CEO of Better Health Advisors, a firm that helps patients navigate the healthcare system, says he’s recommended recording, through Abridge, to more than 100 of its customers. “Communication is one of the most common reasons for medical error,” says Samuels, who previously worked as an administrator at a major health provider in New York. “The literature will support that. This is a tool that helps improve communication.”  

We don’t yet have peer reviewed studies on the impact of recordings on outcomes, in part, because of the difficulty to set up controlled experiments. But researchers and advocates say it’s not hard to see the benefits.

“We don’t know much about the outcomes,” says Dartmouth’s Dr. Elwyn, who is one of the leading researchers in the use of recordings in clinical settings. “What we do know is that people’s satisfaction is high, their recall is much better. I also believe their trust in their clinician is going to be much higher.”

Not all doctors agree. Writing in the BMJ (formerly British Medical Journal), Laurence Buckman, a general practitioner at Temple Fortune Health Centre in London, argues that, “The act of recording, like any measuring of performance, alters the way the discussion goes.” Dr. Buckman suggests doctors will be more guarded in what they say, and that patients too may hold back some information. Dr. Buckman and other critics also worry about privacy issues and about the potential of recordings to be posted online for “entertainment” purposes. And some physicians are concerned that recordings will be used against them in malpractice lawsuits.

At Abridge, we’re aware of these concerns — especially because our team includes doctors too. We’ve had a chance to think about them for both ourselves and the medical community that is now being exposed to Abridge every day. That’s why we’ve worked on creating a strong privacy stance, to protect our users’ privacy. We've also put together a clinician advisory board, to help us navigate these issues. As with any emerging behavior, it will take some time for policies and best practices to develop around recording. However, we believe that patient advocacy, along with widespread distribution of recording devices and improvements in transcription technology, may soon make recordings of doctor visits mainstream.

For patients like Giallourakis, it couldn’t happen soon enough. After his ordeal last September, his brother introduced him to Abridge. “I fell in love with it,” he says. While he might not record some routine appointments, he says the app has proven especially useful in some situations, such as while receiving discharge instructions, before a surgery, or while discussing nuanced and technical subjects. “A conversation with a geneticist about the 50 genes we tested, that’s pretty high level stuff,” he says. “Similarly, when I was talking with my doctor about the details of pleomorphic sarcoma, it felt essential.”

For years, Giallourakis says, he relied on his own memory, or on notes that his parents would take. “We definitely missed things,” he says. “Questions would come up, like, ‘Why is this test or scan being done? Why is the bone marrow biopsy happening again?’ I would be talking to doctors who didn’t know how to explain things or who used medical jargon. I’d hear things from a doctor and report them back to my surgeon, who didn’t fully understand what they meant.”

Looking back, Giallourakis, who has become a nationally-known patient advocate and set up a foundation to support young cancer patients, says that there are three things he wished existed when he first was diagnosed nearly 15 years ago. The first is CancerCon, an annual support event for young cancer patients. The second is Elephants & Tea, a media company focused on the same issue, that’s run by his brother. The third is the ability to record conversations with our app. “From a physical point of view, it’s the most important of all the three,” he says. “It’s been a game changer. Truly.”