The Importance of Record Keeping
Gregory Abowd, DPhil
Date First Published: April 6, 2007
We believe that keeping good records of your child’s behaviors, treatments, therapies, and educational experiences can help you and service providers make more effective services available. There is irony in our message, however. Even though we know the value of keeping good records, our wives will tell you how often we DON’T keep good records ourselves. We are both fathers of children on the spectrum. (Ron has a 14-year-old son and Gregory has two: one 9 and one 6.) We rely on our wives to make the difficult, emotionally-charged decisions on therapies. Even so, our professional experiences in commercial and research aspects of health technologies convince us that ‘record keeping’ is the next frontier that has the potential to help clinicians and researchers accelerate their success with our kids. We also believe that computer and Internet technologies will make record keeping easier and therefore a more powerful tool for autism treatment and research.
Record Keeping Today
We loosely refer to ‘record keeping’ as any organized means to record, then appropriately share, our sons’ medical and education history, challenges, and progress.
In a world where parents of children with special needs are already forced to take on so much to help their children, record keeping conjures up feelings of more tedious work. Parents of children on the spectrum are lauded for their dedication to the needs of their children. Many are overburdened with the task of tracking medical and education history. These papers end up in three-ring binders and boxes of loosely organized reports. So why would we promote more of it? Since we are both involved in computer and Internet technologies, we promote ‘digital’ approaches, which we believe can streamline record keeping and make your records more useful.
There have been important times when our children’s behavior records have been very useful. Occasionally, when teachers wanted to understand the origins of disruptive behaviors they would take note of the details surrounding several examples of the behavior, a so-called “ABC” analysis, for understanding the antecedent-behavior-consequence. Gather enough ABC reports, and, with some experience, you can tease out the cause for the behavior and move towards a behavioral intervention plan that improves the lives of everyone. Discrete trial therapy, done in school or in home, is a very data-intensive practice, and we have seen the importance of basing decisions on data. This enables us to determine which skills are improving and which aren’t. Done correctly, record-keeping practices may help provide a roadmap with directions that may improve our children’s skills.
I (Ron) have experimented with and adapted record-keeping techniques to help my son get specialty healthcare for his unique challenges. I use a special video capture tool to record, archive, and privately share video clips. My son Robby would seemingly crawl out of his skin. By recording this behavior and its context via a tool that I have developed, I was able to transmit this information securely and immediately to our autism specialist over 2,000 miles away. When these time-stamped files were archived and compared to records from other years containing similar behavior, we found that this particular behavior occurred in the early spring. This evidence helped all of us conclude that Robby’s behavior was due to spring allergies rather than the subtle seizures for which we had been testing him.
It is particularly difficult to create and maintain helpful video records and combine these records with other related information. Specialists don’t want to see recordings of a tantrum. Rather, they want to see what happened before the tantrum and afterwards. In addition, they want to see several examples so that they can do their own ABC analysis. This type of information is very important, however, it is very difficult to capture with conventional tools.
Record Keeping’s Future
Gregory is a Professor of Computer Science at Georgia Tech, and his own research can be of assistance for families and professionals in keeping relevant records of behavior and performance. Ron led Product Development and Marketing for Pfizer’s leading surgical technology company, followed by founding and managing TalkAutism. Along with others dedicated to this direction, our newly created company is creating tools and platforms to collect and share such relevant information easily, quickly, and whenever possible, from our kids’ natural environments.
Based on extensive research and development, including multiple focus group sessions and feasibility studies supported by Cure Autism Now and the National Institute of Child Health and Human Development (NICHD), we have developed important strategies to streamline record keeping. In one application, multiple cameras are installed and are always on and sensing their relevant environment(s), such as the school or home. A teacher or parent can retroactively capture an event that just occurred by just pressing a button. The record of what happened is then stored digitally and can be viewed later and securely shared with other professionals. Professionals can then annotate, store, and retrieve this relevant data. The cameras and supporting software become the eyes that watch for important details, freeing up the parents and teachers to attend to the child.
There are other similar strategies that have been developed at Georgia Tech and all have the common theme of liberating parents and professionals from the burden of capturing behavioral evidence of children with autism. For example, tools like PDAs and digitizing pens can also more immediately transcribe our data collection techniques to useful information from which both our families and researchers can benefit.
Going one step further, we can integrate all of this electronic data into platforms such as Personal Health Records and/or IAN’s research database to harness our children’s medical and educational ‘data’ experiences, and take full advantage of the capabilities of the Information Age. And thanks to the information age, we can share this information from our homes, the natural environment where most of the condition is happening, securely — and reduce the burden of stressful travel to strange environments to participate in research studies.
Value to Research
The benefits of long-term data collection are significant, both for the care of individuals with autism and for the support of the growing research community wishing to build a greater understanding of this vexing condition. Perhaps the records we keep for our children can help us show the world that alternative treatments or pharmaceuticals work or don’t work, or that behavioral treatment should be intensified or changed. Yes, it is ironic that we become strong advocates for record-keeping practices. Perhaps it is precisely because we are so bad at keeping records the old-fashioned way that we have created tools to do the collection and sharing for us. To learn more, visit www.bicapture.com, www.mychildshealthrecord.com, www.iabida.com, and www.talkautism.org.
Conflict of Interest Disclosure
The authors listed below have a material, financial, or other relationship with a healthcare-related business or other entity whose products or services may be discussed in, or directly affected in the marketplace by this manuscript. This relationship is specified below.