TAMING THE PAPER TIGER

Creating a Health Summary

Author Unknown. Submitted by: G.T.

     “Our health summary notebook has literally been a lifesaver”.  Pam Murphy brought “the notebook” on a trip from Seattle to Florida to visit grandparents when her daughter Amelia was 2 years old.  “When Amelia has a shunt failure, it show up in unusual ways,” Pam said.  “Most doctors don’t recognize it as shunt failure.”

     While in Florida, telltale symptoms led to an emergency trip to a local hospital.  Pam was able to show notes of Amelia’s typical symptoms, contact information for her neurosurgeon in Seattle, and her most recent CAT scan and MRI images, because she had prepared ahead.  “Keeping notebook like this adds work to an already overloaded schedule,” says Pam, “but it has more than paid for itself.”

     Thomas Webb, MD, MSC at Cincinnati Children’s Hospital Medical Center would agree with Pam on the importance of keeping accurate and comprehensive medical records.  “Beyond its use in emergency situations, it is especially important for those who are seeing multiple providers,” he said.  “Each of your specialists needs to have all the information available from the others.”

     Keeping good records help to make transitions for more smoothly as well.  When the family made a move to Cincinnati, Pam’s organized records gave Dr. Webb an accurate and up to date picture of Amelia’s health situation.  And those records will help ease the transition the 7 year old will someday make from pediatric to adult health care.

     “I take the notebook to every IEP meeting at school,”  Pam noted.  “I can easily answer any question, and people take me more seriously when they see how well I have prepared.”  Accurate and up to dare health records are also useful in communication with others in the community such as physical therapists, occupational therapists, and disability service providers.  Working with insurance companies or other providers of equipment and supplies is easier if you have the documentation that you need.

     There are several ways to approach organizing and maintaining your personal medical records.  “No one method is right for everyone,” says Dr. Webb.  “You must consider your level of comfort  and expertise with technology, the complexity of your health care situation, and whether you would like to be able to carry your records with you in case of emergencies.”

Record keeping systems fall into three main categories:  paper systems, computer bases systems that store your records on your computer, and internet bases systems in which the records are accessible online.

Paper Systems

     Pam finds a paper system to be easier to access in an emergency.  Although she also carries a USB drive containing some of Amelia’s notes and images, a book is available on the spot without the need to locate a computer.  For Amelia, who falls into the “very complicated” range, the volume of paperwork can be overwhelming.  Pam culls less pertinent and older files from the active notebook, and stores them at home.  “I put pictures of Amelia on the outside of the binder.” Says Pam, “as a reminder to me and others that Amelia is a typical kid with a normal life.”

Computer Based Systems

     In a computer bases system, a software program that is a resident on your home computer stores and organizes your medical records.  Pertinent records can easily be carried on a USB drive instead of a bulky notebook, but a computer with the appropriate software will be needed to access the information from the drive.  Depending on your comfort level with technology and the complexity of your situation, you may find a computer based system to be easier to manage than a paper system.

Internet Services

     If you use an internet service, your health records will be stored on its server (instead of your home computer) and are accessible from any computer that has internet access.  You will not need to carry records with you for emergency purposes, but will need a computer to access them.  There are security issues involved with storing records online, so keep that in mind as you choose a provider.

How to Choose a System

     Once you’ve decided which kind of system to go with, there are more choices to be made.  A paper system is completely in your hands—you can design it any way you like.  For a computerized system, there are  dozens of software programs available.  Some can be purchased and some are free.  The website www.myphr.com provides information on things to consider when choosing a system, and how to find the one that is right for you.  An easy search option allows you to search based on system type and cost.

     For keeping children’s records, Dr. Webb recommends the National Center of Medical Home Initiatives for Children with Special Needs, an arm of the American Academy of Pediatrics.  Visit their website at www.medicalhomeinfo.org, follow the “Medical Home Materials” quick link, and find information on care notebooks under the “For Families” tab.  Other sites that he deems worth checking into are www.medicalert.org, and Google Health, a free service that can be found under “More” on the Google home page.

     Getting started may seem like an overwhelming task, but once your system is organized, maintaining it will be easier.  If you haven’t kept good records in the past, you may want to collect old records from previous procedures and surgeries.  “The more information you can provide in terms of dates and procedures, the more successful you will be in retrieving old records,” says Dr. Webb.