Patient Advocacy Resources

*The following are resources that I have found helpful in navigating my very complicated web of immune-mediated diseases. Some may require that you have the consent of the physician or medical practitioner that you are seeing.*

Abridge Medical Appointment Note Recorder: Abridge is a free app available for iOS and Android.  

"Abridge empowers patients to securely record, review, and share their health care conversations, from home to hospital. The Abridge app uses machine learning algorithms to highlight important parts of the conversation for patients to review and share with others.

https://www.abridge.com/

"Co-created by doctors, patients, and caregivers, the Abridge app helps patients and their families directly record their health care conversations, so they can take their doctor’s advice home with them.  After the visit is over, the Abridge app creates a transcript of medical mentions. The transcript can be used as a way to navigate the audio, and patients can tap on moments they want to replay. They can also share it with family and their care team, to help them stay in the loop."

If technology isn't your thing, you or a loved one can always take a notes with a pen and pencil. I have a notebook just for recording my doctors' notes. Try to format each page similarly so that you develop a routine you follow with each appointment. Be sure to put your doctors' name on the top of the page. Develop a system that works for YOU and your care team. Make sure you have the phone number and fax number for your MD's office. Make sure your notes are thorough, as you will need to go back and process all the notes. Ask the provider what he/she would do in your situation. Afterwards, take the time to review the notes and digest the information. After you have had a chance to take it all in, contact your doctor with any follow up questions that you might have.   

To streamline the process with your doctor coming to the appointment equipped with your basic demographics: height, weight, date, of birth, address, phone number, past medical history, a list of ALL drugs and supplements you use each day, surgical history, and the history of the present illness (What is concerning you?). Since so much of this is standardized, you can then maximize your name with the medical practitioner, rather than fill out a bunch of paperwork the day of the appointment in the waiting room. I've found that it saves you a lot of time and stress; doctors appreciate a proactive patient!