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The Best App for Remembering What Your Doctor Said

by Erin LeibowitzPatient, NeuroendocrineNovember 21, 2019View more posts from Erin Leibowitz

I was diagnosed with metastatic neuroendocrine cancer 1,679 days ago. Six weeks before starting a job in another country, five weeks before my 30th birthday, three weeks before completing my masters degree, and three days before surgery to remove said cancer. That was the day they told me that the “spot” of cancer was actually not A spot, but rather SPOTS, and that they would not be able to get it all. Those first few weeks following surgery were a haze, and I remember almost nothing from my early appointments, except a sense of frustration and feeling totally overwhelmed by this new reality. How could I have incurable cancer? At 29?  

The road to my diagnosis was long and winding. Neuroendocrine (Net) cancer is uncommon and can originate almost anywhere in the body. Mine started in my pancreas and had metastasized to my liver by the time it was found. Net cancer can produce an array of hormones, which cause it to masquerade as a number of other conditions. I knew that I was sick for years, but I didn’t know what was wrong. I pursued a diagnosis, but was dismissed time and time again over the course of 15 years. Although I struggled with fatigue and had issues with focus, I continued to pursue my undergraduate and graduate degrees.

By the time my diagnosis came, I thought my organizational skills were top-notch. I spent the better part of a decade taking college courses, I had systems for everything and was particularly adept at note-taking. My roommates marveled over my organizational prowess and my notes were the basis of the study guide we used to prepare for finals. However, I quickly learned that I was woefully unprepared for cancer.

In the beginning, I would go to my appointments thinking, “I got this” and leave knowing that I had taken meticulous notes. After all, I had done it for years as I pursued my degrees – at that point, I could listen, take notes, and process enough to ask any questions that I had in class. If not, I could always shoot over an email and get a response quickly. Why would it be any different in my doctors appointments? I would be sitting one-on-one with the doctor, and I could always follow up with questions, right?

But it turned out that my notes from my doctors appointments were pretty useless. I’d have fragments of sentences like “side effects: skin !!!! Expect diarrhea, forever? :(” I tried taking notes on my phone, my tablet, and in a notebook. I always missed something critical, and it proved harder than expected to get in touch with my medical team between appointments to fill in the gaps. And seriously, what WAS going to happen to my skin?

Since my diagnosis, I’ve tried every system imaginable. Each one, including the bring-a-friend option, has fallen short. If I did bring a friend or family member, they often got the names of drugs or procedures wrong in their notes because they were not familiar with them. Who could blame them? When you are new to cancer, no one is familiar with the terminology. But when you are trying to make decisions, having all of the information is critical!

My family also focused on different things than I did during my appointments. Although we went to the appointments together, it seemed we did not remember them the same way. They only remembered the positive things and the upside. I remembered the things that scared me the most. It made it hard to figure out what we had actually been told with our conflicting accounts.

So when I heard about Abridge recently, I was excited to try it out. The Abridge app records your appointment with one tap (after prompting you to make sure everyone in the room knows you are recording!). After your appointment, you hit “I’m All Done!” and then you can enter in a few simple details, like which doctor you saw and what the appointment was about. Then, the app quickly uses machine learning to pull out and transcribe key medical moments of your appointment.

Erin using the Abridge app

Erin using the Abridge app

Instead of having to manually search through a recording of your appointment, you have a transcription of the key moments right there. You can easily find those important moments from the appointment and tap to listen to them again. Using Abridge during my appointments allows me to relax and focus on my conversation with my doctor, knowing that I have everything I need captured to revisit later. I also found it works great for settling post-appointment arguments about what the doctor said! 😉

It’s great to be able to revisit my appointments again myself, but it is also an invaluable tool to help coordinate care between family members. The app includes a share function that allows you to send the appointment to a family member or friend, so its like they were there with you, even if they were unable to attend. This function is also great if you want to share between medical providers, in order to keep different members of your team on the same page.

Because neuroendocrine cancer is rare, I made the decision to spend the summer working with a specialist out of state. As a result, my parents have been unable to attend some key appointments with me since it isn’t realistic for them to come to town for each appointment. With the help of Abridge, I have been able to record my appointments and share them with my parents. They thought of questions that I hadn’t considered based on what they heard from the recordings, and I am looking forward to bringing those questions back to my oncologist.

Abridge is an exciting tool that can help patients manage their healthcare more effectively. The team at Abridge prioritizes patient privacy and emphasizes that you own your own data. I love the fact that I can use the app knowing that my personal, private appointments are protected and that my data will never be sold or shared. 

As more patients use the app, the technology will continue to improve. I am really excited to continue using Abridge in my appointments and to see what additional features they unveil in the future!

Download the Abridge App


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