Optimizing the Personal Health Record with Special Video Capture for the Treatment of Autism
Improved imaging techniques and the increased need for a personal health record platform suggest that a Telehealth based system has an excellent potential for improving patient care and providing a high capacity for information storage and retrieval. New video-capture technology will allow parents, schoolteachers, and caregivers to capture a child’s behavior for subsequent evaluation by specialists worldwide even during a time of crisis. Experience in a recent hurricane disaster illustrated the advantages of merging these two entities, especially when addressing the needs of displaced families who have a child with autism. It is clear that Telehealth based systems can shorten the time for diagnosis, potentially increase diagnostic accuracy, reduce costs, and contribute to an improved status of personal health records.
KeywordsTelemedicine Autism Store-and-forward Personal health record Electronic health records Video telehealth
Definition of Autism
Autism is a neurological disorder that begins in early childhood and persists throughout adulthood. This disorder affects three crucial areas of development including communication, social interaction, and creative or imaginative play. Children with autism characteristically exhibit repetitive or restrictive behaviors that make it difficult to adapt to new environments. Additionally, these children often experience sleeplessness, obsessive-compulsive and self-injurious behaviors, and hyperactivity (Lovaas 1987). The symptoms can lead to isolation, anxiety, parental stress, and depression. At present, limited adult outcomes for autism show that most will never marry or live independently. When children receive early intervention they are more apt to develop language skills, articulate their feelings and needs, and lead more productive lives in adulthood (Prater and Zylstra 2002).
Incidence and Diagnosis of the Disorder
National statistics show that Autistic Spectrum Disorders (ASD), including classic autism, Asperger’s Syndrome, and the Pervasive Developmental Disorder (PDD), are now the third most common childhood disorders in the US today as noted by Lovaas (1987). The number of children diagnosed with classic autism has grown from 1 in 10,000 in 1989 to as many as 1 in 166 currently (Bertrand et al.2001; CDC 2000). Diagnosis of the disorder at an early age is crucial to the effective management of lifelong symptoms (NRC 2001). Intervention has shown to be very effective when applied during early childhood in improving long-term outcomes and reducing disability. Determination of appropriate therapeutic regiments by developmental, behavioral, neurological, and other specialists is equally important to optimize a child’s potential for improvement during this narrow early childhood developmental window.
Children with autism face many challenges in accessing professional services for diagnostic and therapeutic purposes. Families must often wait 3–6 months to obtain appointments with qualified Autism practitioners. Additionally, problems may arise because baseline and aberrant behaviors are unlikely to be witnessed by the treating practitioner during brief office visits. It is known that children with autism may react more agitated when faced with changes in their normal routine, or alternatively, become uncharacteristically quiet due to overwhelming anxiety. Such changes in behavior may prevent the practitioner from obtaining a representative (accurate) perspective of the child’s symptoms.
A child diagnosed with autism may need multiple specialists and further evaluation and subsequent treatment. Families may have to travel long distances to other cities in order to obtain such services, and may need additional frequent evaluations to assess the effectiveness of the applied therapy. Parents and caregivers are routinely expected to communicate with the specialists about abnormal child behaviors, potentially adverse reactions to medications, and subtle changes in a child’s behavioral pattern. Parents are also required to convey good medical and behavioral histories that can provide adequate background and context for the treating practitioners.
The school is also a very important environment for a child with autism. Early diagnosis and intensive behavioral interventions are proven factors for a good long-term prognosis. Teachers and para-professionals who provide front-line care must be able to accurately report a child’s problematic behaviors. Detailed assessment of events such as tantrums, seizures, self-injury, and regression are important to healthcare providers in determining the effectiveness of medications, behavioral interventions, and other therapeutic strategies.
What is Needed
Telehealth, delivering healthcare at a distance, can effectively address many of the challenges facing families with autism today. Technologies that can contribute to the evaluation, diagnosis, and treatment of autism include the following:
Custom Digital Video Capture
Unobtrusive digital video recordings of a child’s behavior at home can deliver health care providers accurate information about a child’s symptoms and the impact that therapeutic interventions have on the child. Such digital recordings allow the capture and storage of video and audio content on various memory media for subsequent transfer into a secure web-based environment.
Behaviors are captured easily and inexpensively, providing caregivers with accurate and timely information.
Data capture and storage meet stringent privacy and security provisions, providing both patients and caregivers the assurance of privacy and confidentiality.
Easy file naming and retrieval will allow clinicians to assess specific behavioral changes over time, encouraging healthcare providers to embrace strategies of ongoing patient monitoring.
Personal Digital Health Record
Providing efficient and secure platforms for video-clips, medical data, test results, survey data, etc.
Providing a reliable framework for long-term medical and therapeutic histories
Providing almost unlimited capabilities in “store and forward” access to geographically remote specialists
Providing reliable and simple access to long-term medical and behavioral data for use in comparative evaluations
A consortium of national autism support organizations created to help autism families affected by Hurricane Katrina and coordinated through a state university foundation in Idaho, was able to provide a Telehealth evaluation for an evacuated Hurricane Katrina family (Reischl et al.2006). The child’s health records had been lost during the storm. The evaluation was done via videoconference, and video clips of the session were captured of the child’s behavior and the parent’s responses. This Telehealth consult expedited the formal evaluation of a child’s autism condition and subsequently produced a legal document enabling an out-of-state school to admit the child. This information can now be stored on a personal patient record belonging to the child’s family. This approach allows the family direct access to the records without jeopardizing personal privacy.
Impact of Technology
Improved diagnosis and follow-up treatment for patients with autism.
The video clips can provide an important improvement in the ability to quickly and accurately convey behaviors of children at home or in school. Such technology will allow parents and teachers to document behavioral patterns while the child finds himself within a familiar environment. The video clips will avoid the reliance on inherently subjective interpretations of untrained or inexperienced persons in explaining and summarizing the crisis behaviors of children.
More efficient use of institutional resources.
The technology-based solution can assist in expanding services quickly to a larger population. An improvement in medical, therapeutic, and educational information sharing via telehealth can be a method by which institutions can leverage their expertise across the autism community nationally as well as internationally. Travel always represents a significant cost not only for the institutions but also for parents, teachers, and the therapists who must spend unproductive time traveling to reach either their patients or the patients and their parents traveling to see the specialists.
Treatment, evaluation, and research.
The store-and-forward platform provides a medium to expedite evaluation by clinicians familiar with identifying and treating children with autism, and facilitates consultation between front-line providers and remotely located tertiary specialists.
Integration of multiple systems
The data platform can provide not only the hosted electronic health record servers but also provide the appropriate IT support for families, autism clinics and research programs, and schools for customization of local health record databases and long term system maintenance. Once the PC interface and health record infrastructure are in place, the development and interface of additional data collection devices can be achieved easily. Examples include transmission and storage of data from PDAs, tabulated responses from computer learning programs, or data from telemedicine instruments increasingly being used with other populations. Also, this platform can facilitate collaboration in child study teams, streamlining what is currently a time and labor-intensive process. With proper informed consent and patient privacy protected to the strictest HIPAA standards, the underlying database of behavioral data—consisting of video clip data, patient profile data, etc.—can provide a rich environment to tie this into existing patient or research databases.
Health insurance reimbursement will be an important enabler and market driver for this new technology and the services it can provide. Reimbursement for review of video clips and the development of therapeutic plans to address the individual needs of a child with autism could be seen much like a radiologist’s off-site review of radiographic images generated at a clinic or hospital or speech therapy services provided for severely disabled individuals that are currently reimbursed by health insurance plans (Oberleitner et al.2005). The store-and-forward video clips could be viewed as a diagnostic and evaluative service. Educational mandates such as “No Child Left Behind” could be carried out effectively in the autism field by this new technology by being able to set an objective “baseline” against which “progress” video capture data can then be compared later. The video capture data can represent a major cost-savings alternative when compared to the current reporting system which is based on “subjective” in-person evaluations. Additionally, the commercial potential may also be driven by Medicare policy. Medicare is increasingly accepting Telehealth visits for underserved senior citizens in rural areas. It is clear that the acceptance of Telehealth by insurance providers, health care providers, and the general public will be determined in the very near future. It is also likely that special needs individuals may be the first to receive the widespread support from the application and use of Telehealth.
Summary and Conclusion
Autism affects millions of children in the US today. However, only few healthcare providers and educators currently specialize in this field. Subsequently, long waiting periods delay diagnosis of this disorder and children do not receive timely professional attention. Early intervention is important in treating the autism spectrum disorder. New technologies and the increased acceptance of a personal health record platform suggest that a Telehealth based system has strong potential to address these deficiencies in the future. Use of video-capture systems will allow parents, schoolteachers, and caregivers to capture a child’s behaviors at home and in school for subsequent evaluation by specialists nationally as well as internationally. These systems will shorten the time for diagnosis, increase diagnostic accuracy, reduce costs, and contribute to an improved status of personal health records world-wide.
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