Austin E. Wilmot, M.S.W., L.C.S.W.
Paperwork, notes, consult summaries, CDs, lab results, research articles, contact information, surgical pamphlets, billing statements and much more... These are some of the items that parents accumulate during their time advocating for and managing their child's care. Having a system to organize all this information sets the stage for more efficient navigation of your child's medical history, less stress and peace of mind. While electronic medical systems (EMRs) are becoming more accessible for patient access, EMRs come and go, servers crash and accidents can happen. Having your own system and physical copies of important records (as well as your own digital backup) has many benefits, especially as it relates to the lifelong care that comes with CHD.
For the purposes of this article, the items below are needed to begin this project. While this is one example of what a record system could look like, feel free to adapt to your unique situation and needs:
A large durable binder (preferably D-ring) with clear sleeves
Tabs and a table of contents (color coded, numbered, at least 15 tabs)
A pencil pouch with 3 holes for inclusion in 3-ring binder
A binder is preferable over folders as everything is prevented from falling out and getting disorganized or lost.
All documentation and materials will go in chronological order within each tabbed section that you have defined (since the first year post-birth is the bottom section on the table of contents, the oldest information is in the back of the binder and the most current information is in the front). This will make it easier to navigate the binder, as you won't have to move all the paperwork through the binder rings every time you need to add new documentation. The top-most section will already be the most current timeframe.
Keep billing statements and materials concerning medical finances and insurance in a separate binder entirely. The separate binder can be organized chronologically--in a similar fashion to the medical binder--for ease of cross referencing and finding information. Keeping these particular items separate will make it easier for yourself or others to get straight to the medically important documentation and information that is important for your child's care, without delay. No need to have old bills and insurance claims in the way when you are trying to get straight to the operative report or echo results.
Create cover sheets to go in the clear sleeves of the binder with your and your child's important identity information (also for returning binder, if lost)
Insert the table of contents and tabs and define each "chapter" on the table of contents page as date ranges that are one year in length. Start from the bottom of the table of contents, for example, working your way up:
3/15/2013 - 3/15/2012 (chapter 3)
3/15/2012 - 3/15/2011 (chapter 2)
3/15/2011 - 3/15/2010* DAY OF BIRTH (chapter 1) [bottom of table of contents]
Insert the pencil pouch into the binder
Gather all the records that you have and separate in the same fashion that you have your tabbed sections. You may sort documents in whatever ways make the most sense for you beyond staying chronological within each section.
If there are any documents that you wish to have in the binder that you do not have already, then request those records from the doctor or hospital. Sometimes records can get lost or corrupted, so having your own backup might come in handy. For example, having any regularly repeating test results (such as the yearly echo report) or regularly repeating notes, such as the yearly summary letter to the family doctor, can be helpful.
Put all digital records in the pencil pouch, including CDs, USB drives, etc., that you have.
If there are any other diagnostic images or data that you do NOT have, but think would be important to have a copy of, then request those records from the doctor or hospital on digital media. Sometimes imaging can get lost or corrupted, so having your own backup might come in handy.
Backup all records in at least one location, such as Google Drive, Dropbox or other hard drive, USB drive or cloud service.
Backing up to a cloud is additionally useful as those records could be pulled up from anywhere in the world in the event of being away from the physical records or if loss occurs to a local backup. Scanning documents as PDFs will also render them searchable, which can come in handy. Any digital media disks or other data can be backed up as is appropriate. Some radiology CDs allow you to copy the entire contents of the CD to your computer, including the viewing software. Others make this harder. In any event, you can screenshot any important diagnostic images (search Google for the shortcuts on how to do this - for example, using Snipping Tool on Windows or Command+Shift+4 on Mac) and save as JPEGs.
Show your child their binder and walk them through what it is and how it is organized. It may create an opportunity for talking about past procedures, exploring questions they have or other feelings.
Continue to maintain the binder as time goes on and ask for the records you need to stay current instead of getting behind.
Consolidating your work
One of the secondary benefits of doing the work of organizing and reviewing all these records is that it can help you generate a summary document and timeline that outlines your child's medical history in a more detailed fashion. This could be a "go to" document that helps explain your child's condition, surgical/interventional history, current medications, allergies, medical providers, etc. You might include screenshots of critical images, pictures of the model/registration numbers of foreign objects (e.g., defibrillator, stent, valve, etc.) or put together a table and graph that reviews changes in noteworthy test values over time (e.g., echo values, such as gradients or aortic diameters). This could be shared with your child's doctor, as well. This document can be kept in the front of the binder and maintained as time goes on. Your own view at the totality of your child's records might produce some interesting things to share or ask about at your child's next appointment.