There have been plenty of times in my life where I have been at the doctor’s office either as a patient or as a teenager when I was a caregiver to my mom, trying to grasp all the information the doctor is providing. The doctor used medical terms that I have never heard before, yet I would simply nod my head in agreement because I was nervous to ask him to explain what it meant. This goes back to my fear of being judged and luckily overtime I learned from my dad that no question is a dumb question.
One of the other challenges I have faced (and still face today) is being able to take notes while the doctor is speaking, while also making sense of each of the words being used. I can only write or type up a note on my phone so fast and it doesn’t help that I am not the greatest at doing two things simultaneously (but then again is that an actual skill?). Having a tool for even the most knowledgeable and busy patients or caregivers (like myself) makes life more manageable and can take the burden off of notetaking.
I recently spoke to one of the founders of an app called Abridge and before we started discussing the app, he shared his own story with me. He explained how he was inspired by his own family’s experience with a rare disease that he wanted to help others. The app is an opportunity to selectively transcribe the important medical parts of the discussion at the doctor’s office and even call out areas that it thinks may be included in the next steps of your care plan. Not only that, but it allows you to relisten to the conversation to better understand what he or she said while allowing you to review the information on your own time.
Abridge has a FAQ that goes over potential concerns such as data security and privacy. As a patient advocate and someone who works professionally in the health space, transparency is important in building trustworthy relationships with community members. It was reassuring to read these and know that they put the information in the hands of their users.
To be honest, I didn’t even think about how important an app like this was until I spoke with one of the founders. I sort of gave up on notetaking or trying to access information through one of the many different health portals. I felt like whatever I could take out of those visits or meetings were better than nothing. But now knowing there is a way to solve this issue for me and many other members of the rare disease community makes this even more exciting.
I know this would have been a huge help at all the doctors’ visits that my mom went to when she was still alive. I am excited for the next time I go into the doctor’s office and let the doctor know that I plan on recording it for personal use. One less phone call or follow up email goes a long way in the rare disease community.