Monday, December 1, 2014

Why having accurate medical records is important for family caregivers

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Parents need to make sure that the details of medical events occurring for their child with special needs are correct.  This is particularly important during hospitalizations, when changing health care providers, or transitioning to adult health care.   

How to keep records
Parents should keep brief notes of visits and especially bring a small spiral notebook or online if they have access during hospitalization.  They should also get “clinical summaries” after appointments and have their child’s PCP (primary care physician such as a pediatrician) copied.  Family caregivers can request copies of other records, such as hospitalization, from the department that cared for their child such as gastroenterology etc.  If the child has complex needs, families may have to get records from each department.  In addition, parents can request results of testing such as x-rays from radiology and any procedures from surgery.  It is important when getting surgical records to also request pathology reports (results.)  It may also be a good idea for the child to wear a medical id bracelet that has all of their basic information on a flash drive.

Making sure records are correct
Parents can compare the doctor’s notes with their own.  It is vital that any major events such as “coding” and needing to be resuscitated are documented correctly.  Correct records will result in better care and inaccurate records can have negative implications. 
What to do if records are inaccurate
Families can discuss the record with the appropriate department that treated the child.  Sometimes, older records can’t be changed in the computer system.  However, parents can ask to have the record “amended” which means an additional note will be attached to the record to clear up any confusion.  Families should request a copy of this additional record in writing.  They can use this not only for their child’s medical history file but also for new health care providers who are just learning about their child.

Why good medical records are so important
Inaccurate medical records can adversely affect a child’s health care.  For example, pulmonologists and neurologists would need to know if a child went into respiratory distress during a seizure.  Nursing staff would need to know of infections that the child acquired in the hospital such as urinary tract or c-dif (clostridium difficile) infections to which the child wouldn’t otherwise be susceptible, and take precautions.  Surgeons and anesthesiologists would need to know if a child had to be reintubated with a breathing tube after a procedure.  When children are have complex needs or are hospitalized, they may have many providers, so these details will help prevent adverse events. 
Families can ensure that the medical information being shared about their child is correct.  This will result in better health care and better outcomes for their child.  
American Academy of Pediatrics-Build Your Own Care Notebook
Washington Department of Health-Care Notebook 
For self-advocates - My Health Pocket Guide
Helpful Contacts:
Family Voices/ Family-to-Family Health Information Centers
*For more information on this topic, see Reviewing and Amending Medical Records” factsheet from the Statewide Parent Advocacy Network at
Remain Hopeful, 
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (, a national network that works to “keep families at the center of children’s healthcare” at or FB  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at or FB



  1. I have a blog post about our medical binder but I love the look of this bracelet. I have to start thinking about medical bracelet for both my daughter and I we both have a rare genetic disorder called 22q11.2 deletion syndrome. Found your blog doing a google search for top special needs blog.