Monday, April 17, 2017

Creating a Healthcare Advocacy Notebook

If you've ever taken care of someone with a chronic health condition -- or if you've ever had a chronic health condition yourself -- you know that it can be challenging to deal with all the information, test results, doctor contact info, etc.

One of the best things you can do in this situation is to create a Health Advocacy Notebook where everything is gathered in one place. I learned this when I took care of my mother in her final years and I've had occasion to use it since for other family members (including myself) as well.


1. Start by getting a really good-quality notebook. Too big and it will be too cumbersome, but too small and there's not enough room. About an inch and a quarter is a good size.

2. Get a bunch of dividers. Get some that are just plain dividers and some dividers with pockets in them for keeping looseleaf handouts. Trust me, you'll want these. Medical people are always handing you loose pieces of paper and expecting you to keep track of them.

3. Start organizing the notebook in a way that makes sense for your situation. This will look different for everyone. Here are some specifics you might want to consider.

a. Overall summary of the person's situation. Basically, it's a cheat sheet for the hospital to have all your information in one place in a hurry during an emergency. Keep multiple copies so you can quickly give the hospital a copy and still have others. Be sure to keep the medications updated as these can change quickly. Include things like:
  • name
  • date of birth
  • address, cell phone number, and other contact information
  • all health conditions
  • list of current medications, dosages, and how often taken
  • history of major surgeries
  • next of kin and their contact information
  • power of healthcare attorney/living will information
b. Calendar. Many people choose the make the second section of the notebook a calendar. That way you can keep all the appointments in one place and available at a quick glance.

c. Blank paper for taking notes. It's so hard to remember questions for appointments; this section can help you keep track of those. Or it can be a great way to take notes during appointments and writing down the answers to those questions. You can go back and organize them later and decide what to keep.

d. Latest labs, scans, and test results. It can save time if you already have a copy of your latest test results instead of having to wait to access doctor files. Some people keep the actual images of x-rays or CT scans in the notebook but this can get too crowded for some. Use your judgment.

e. Specific medications or conditions. If you have an unusual condition or there is something unique about a medication you are on, a section on this could be very useful for quick reference.

f. Treatment side effects, alternative medications, or complementary therapies. Many people find it useful to keep sections on side effects or alternative therapies etc., whatever is most useful to you.

g. A page or two of plastic business card or trading card holders. In an emergency, you are often asked for the contact information for various doctors or labs. You can grab a business card from every doctor or therapist, stick it in the plastic holder, and always have contact info for each in one easy location. You'd be surprised how often you might need to find the address or phone number for some obscure doctor from several years ago. Keeping a card file can save a lot of time and effort. (These tend to be slippery so I prefer to keep these in the back.)

h. Keep a pen or two always in the notebook. That way you are always ready to take notes or write down questions and observations.


Health Advocacy Notebooks can be a powerful tool to helping yourself or others when health challenges present themselves.

It's easy to get overwhelmed when a loved one becomes a "frequent flyer" at the local Emergency Room, or to forget vital information if you get called in the middle of the night. If you have a grab-and-go notebook you are less likely to be caught unprepared. Keep the notebook in a bag with a sweater, some easy snacks, a book, etc. so that all you have to do is grab the bag on your way out the door in an emergency. That way, you will have supplies in case you are needed at the hospital for a while.

No two Health Advocacy Notebooks will look alike; each is going to be unique to your situation. Customize it to your own needs and it will serve you well.