The Power House Patient, Chapter 2 – Being Organized, Not Overwhelmed by Julie Buyon

by agebuzz Contributing Editor Julie Buyon

Dealing with our current healthcare system can be really challenging, with different specialists, unfamiliar terms, mysterious tests, unexpected costs, and communication roadblocks. When did I last have a bone density test? Who referred me to the dermatologist? Just how long has my knee really been bothering me? Where did I put that list of questions to ask my cardiologist? It’s a lot to keep track of, especially since not all of your doctors have access to all of your medical records.  

The Powerhouse Patient is an organized patient. The Powerhouse Patient has the answer to all these questions at her or his fingertips.  

Being Organized: The Power of KISS

KISS – Keep It Simple Stupid. Don’t let the need to be organized add to feeling overwhelmed!  Many folks will suggest binders, multiple files, online apps, and the like, but for myself and the many families with whom I have worked, simple is best. Go to your local office supply store (or any large drug store chain or even the supermarket) and buy a marble composition notebook.  That’s right, the same one you bought for your kids in elementary school. This becomes your up-to-date, portable source of personal health information.  

Use the notebook to keep track of things. Everything gets written down in the notebook, including:

 -appointments

 -notes from conversations

 -physician referrals,

 -advice from others

 -your questions as you think of them

 -all the notes from all discussions with physicians

 -medications taken

This is a great way to keep track of everything and keep the information under control. No more, “Where did I put that slip of paper with the referral on it?” or, “Which website did Sue suggest I look at?” or, “What was that medication my dermatologist prescribed for me a few months ago?” It’s all in your notebook, small enough to fit into a purse or briefcase.

This is also where you write down the questions that come to you at 3 a.m. and keep you up at night. This is where you write down what date your knee started bothering you, or you noticed a rash and how its size has changed, or when that indigestion became a regular thing. 

The day before a visit to a doctor, review the notebook and consolidate all your questions on one page – leaving lots of room to write down the answers – so you can get all the information you are seeking and have the space to write down recommended next steps. Date each entry in the left-hand margin.

After a visit to the doctor, there may be test results, radiology summaries, and other important information that might be helpful to have handy. You can staple test reports (like your bloodwork or mammogram results) and summaries from your doctor visits right into the notebook. (And Lesson Learned: Always ask for a paper copy of test results so you can put them in your notebook and refer to them when needed. I’ll cover the reasons for that in greater detail in another post about getting the most out of your doctor’s appointment. But for me, having the results of my colonoscopy on hand in my marble composition book made getting a diagnosis of diverticulitis much quicker, because my discomfort was in an area of concern identified from a previous test months earlier.) You can also tape business cards of new specialists you see onto the pages. But you must never, ever rip out a page! (Using a composition notebook rather than the slightly larger spiral notebook helps resist such a temptation!)

Your Health Information: Backwards and Forwards

Forwards: On the front cover:

-write your name

-the date you are starting the notebook

On the inside cover: Jot down a few key pieces of information for easy access:

-“Return to…(your name and contact information)”

-your pharmacy contact information, 

-your primary care physician name and contact information 

-other health care professionals you see often

-your insurance information

Backwards: Starting from the last page of the notebook and working backward, keep a running list of: 

-Current medications, supplements, and interventions (i.e., acupuncture). Include the start date, dosage amount and frequency as well as why the medication or supplement is being taken

-The names and contact information of current practitioners (acupuncturist, chiropractor, physical therapist, etc.) 

When you finish a course of medication – or specialized treatment such as physical therapy – note the date and place a big check mark by it, as an identifier that it is no longer current. If you fill in a number of pages (and that will likely take a couple of years) mark the page with current information with a paperclip for easy access. 

Now you’ll have all this important information on hand so you can provide every health care practitioner you see with the full picture. It’s also a great resource in case of an emergency. 

Just Do It

Don’t feel compelled to fill in past medical history – just start your notebook with where you are today. Even if you have no current health issues, buy a notebook (and one for your significant other as well) and fill in the front cover information suggested above and your current medications on the back page. Look in your calendar for your next doctor’s appointment (even your annual checkup) and create a reminder to bring your notebook with you. Then you are good to go!

This, That, and the Other Thing

Of course, there are always papers you want to hold onto that might get too bulky if stapled to the notebook, so consider keeping 3 manila file folders:

-A red folder for medical records such as longer test and lab reports 

-A green folder for all billing/insurance matters 

-A blue folder for information that you get from various sources

All these folders and the composition notebook can be kept together in an expandable wallet folder (If you have any lawyers in your life, have them grab you one from their office). 

The Powerhouse Patient: Prepared + Organized = Better Care

Now your important health information is all in a folder, sitting on a bookshelf when you need to access it:

-It will be a snap to fill out forms in the waiting room at your doctor visits because all the info is in the notebook. 

-You will have less anxiety because you know where everything is.

-You will have gotten the most out of your healthcare visit because you were prepared.

-You will receive better care because you will be providing better, more accurate information.

-You will have better care because you will have all your notes from healthcare providers in one place.

-You will receive more thorough care because you will have kept track of all your questions and have a place to write down the answers.

You are prepared and organized! You are a Powerhouse Patient! You are a rock star!

In future posts, we’ll review how to formulate questions in advance of seeing the doctor, as well as how to be organized if you or a loved one has a serious illness.

Julie Buyon is a palliative care patient advocate. She has professional and personal expertise in assisting people with complex illnesses navigate the health care environment. Julie’s role is to help patients feel empowered, and her agebuzz posts are intended to make sure agebuzz readers have all the tools and info they need to advocate for themselves and their loved ones. Julie would love agebuzz readers to email her at [email protected] with any questions or problems encountered with the health care system, and she will do all she can to address those issues in upcoming blog posts. She also welcomes feedback regarding her advice or recommendations. Read all of Julie’s agebuzz posts here and get in touch with Julie now at [email protected].