It may prove difficult to understand or wrap our minds around what the term ‘medically complex child’ represents. How many diagnoses do they have? How many body systems are involved? How many specialists does the patient see?
Studies show that children with medical complexities have 2 or more chronic health conditions, take at least 5 medications daily, and average 13 different physicians including 6 different specialists. How do parents keep all this information current? How do we track it? How do we update it? How do we memorialize the sequence of surgeries or medications tried? Then, when as parents we are successful at retaining all of that, how do we successfully and accurately share and disseminate that information where it needs to go? One of our patient’s parents shares that prior to surgery is a time of great stress and anticipation for him, and the last thing he wants to do is to repeat to 5 different practitioners, one after the other, the same list of his child’s medications or allergies. Or how about when we need to call 911, how do we get that first responder the information they need to have without any error, hearing gaps, or a microgram being written as a milligram in dosing?
Brades’ Place prioritizes accurate record keeping of the voluminous information and the sharing of this information with the team members who need it with as little distraction as possible. 80% of serious medical errors are due to miscommunication between professionals during the transfer of care. It is critical to communicate and record this information accurately whenever care is transferred from one person/team to another.
Technology offers us some great ways to minimize the risk of miscommunication and ease the burden of record-keeping for parents. Could we upload a video of how to feed with her G-Tube so that night nurses can refer to it while caregivers are sleeping? Can we attach a QR code to a list of medications and allergies so that when first responders arrive they can scan a QR code on the child’s backpack or bracelet and have that critical information?
One great place parents can start this journey is a free app called Lightning Bug. It was developed by Pennsylvania’s pediatric palliative care coalition as a tool that helps caregivers access and track their health care data. It works on your smartphone and on a computer and can be filled out little by little or all at once. It has enough space for all of their medications, their specialists, and their procedures. Also, when the GPS of your device is near your pediatrician or pharmacy it asks if you have any new information to input into the file. This prompt reminds you to keep your child’s record current. And better still, it allows you to download exactly what you need to share with others, such as medications, or allergies so that the app can do the routine sharing of information while you can focus on asking more relevant questions before surgeries.
Brades’ Place prioritizes easing the burdens parents and caregivers have and recommends using the PPCC’s Lightning Bug App to help record, organize, and share medical information. Watch this short video for an overview of Lightning Bug.