Medical Binders: Organization Means Better Advocacy

Organizing is what you do before you do something, so that when you do it, it is not all mixed up. ~ A.A. Milne

We’ve all been there. Sitting in the crowded waiting room, trying to remember the questions you had for the physician, trying desperately to keep the two vitals you took in your head while also watching the two-year-old touch all the things, knowing you’re going to bring home some type of new germ. It’s nerve-wracking and exhausting and the appointment hasn’t even started!

Now imagine feeling completely ready for this and every other appointment. Imagine having no concerns about the upcoming meeting with your provider because all your thoughts have been organized into one space that you can use to successfully advocate for your child! It’s totally possible! You can do this!

All it takes to prepare yourself for these situations is a Binder that will organize your child’s medical records and allow you to speak wisely about their conditions, struggles and successes. It’s as easy as 1, 2, 3!

Creating Your Own Medical Binder

Get rid of unnecessary paperwork.

Most discharge/depart summaries do not hold pertinent information. Many times, they are 6-7 pages of reiterated notes by the nursing staff and doctors. They include current diagnoses, updated vitals, and medicines. That’s a lot of paper that you don’t need to carry around with you! Also, lab work older than a year, unless drawn for genetic testing, is not something worth keeping in a binder. Blood changes. The composition of blood changes. Keeping the last 12 months of lab work allows you to remain current while also letting go of previous labs that might be taking up space on your desk, in a folder, or all over your kitchen counter!

This binder is NOT for providers.

It’s for you. Being organized and keeping paperwork in a systemized fashion allows you to be the most competent advocate you can be during appointments and other medical meetings. Keep your binder in front of you. When asked questions about recent testing, updated diagnosis lists, medicine dosages, and surgical history, refer to your binder. That’s why it’s there! It is a structured, prepared report of your kiddo. Use it to your advantage! Nothing impresses a provider more than a well-equipped parent who is ready to answer questions confidently and with ease.

The binder will change!

It’s okay to update your binder as your child grows. You will find that some sections may need to change as they get older and that’s normal! What worked for your tiny baby as she made the journey home from the NICU might not work for your 5-year-old as she enters kindergarten. Sit down every six months and update your Clinic Notes section. Make additions to the testing and lab work section. Delete and subtract diagnoses as they resolve over time. There is no right or wrong when it comes to the binder, just as long as you don’t keep EVERYTHING you’re given!

Helpful tips when organizing

• Many providers are short on time and do not have the occasion to sit down and read through an entire book of medical history. The more concise and organized your information is, the easier it will be to pass along that data to a provider who is watching the clock.
• Several of the items suggested in the Table of Contents below likely can be found on your health system patient portal. Becoming a portal member allows you to access clinic notes, lab work, testing results, recent vitals and much more. Most times these are printable as well and can be put directly into your binder to aid in continuity of care.
• Lab work can be put in chronological order from the most recent to the earliest but it might not all be necessary. If you think it’s necessary, use small sticky notes to notate within a section. Tabs that can be removed easily allow for changes to be made later.
• Many people find it beneficial to have two binders. One for more pertinent information when meeting a new doctor, and one for organizing less time sensitive information that still needs to be kept in a safe place. The second binder would remain at home for your personal use. If applicable, other families find that having a binder for IEP/School Information essential. These would be laid out a little differently but do have the same type of organizational model.

Binder Contents

Here is a snapshot of the Table of Contents that I use for my son’s binder. It takes the many different sections of paperwork that could exist when taking care of a child who is medically complex and puts them in an order that is easy to navigate.

If you wish to begin creating a Medical Binder for your child, please see the links below that will help you get started. They are blank templates that can be printed for use in the beginning stages. Information can be handwritten or you can edit these ones in programs like Adobe Acrobat. These will allow you to have all the medical records necessary for each appointment all in one place.

Kimberly Hassmer and her family live in Sandston, VA. She currently helps parents discharging from the NICU to organize their medical records, is on the Parent Advisory Board at Children’s Hospital of Richmond at VCU, and leads a Feeding Tube Support group there as well. If you have questions on how to best organize your child’s medical records, emails can be sent to her at MedicalBinders@gmail.com.