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Ron Oberleitner  "TITLE: Could Telemedicine Work for Autism?
www.talkautism.org covers Ron's unique approach to autism & telemedicine.
Thursday, July 11th at 7 p.m. (Eastern), Note portions of the text have been edited for spelling and grammatical errors, while other text with errors was left in tact in the context of the chat.
 
This chat area is hosted by talkAutism.org. For additional support, please visit the talkAutism category on ParenthoodPlace boards, and talkAutism.org . Welcome!

Oberleit says, "Hi everybody, I'm Ron Oberleitner - from Princeton Autism Technology (PAT), and talkAutism. For tonight's specialty chat, and this inaugural discussion on the subject of 'Telemedicine and Autism', I might be doing much of the 'talking' Ö , or I'll gladly defer to others who should feel free to chime in"
Oberleit says, "Quick background for me -- I have spent more than 14 years heading up Product Development and Marketing for some successful medical device companies (Leibinger / Howmedica / Pfizer / Stryker) , before running my own company for the last couple of years working with other medical technology companies. I've headed up various 'emerging market' projects, which got me involved with different uses of telemedicine. (We may get into some of those projects if they're relevant)."Oberleit says, "I'm also the proud father of a nine year old son with autism named Robby, plus two other great kids. This has allowed me to become a 'default expert' on autism. A group of us started PAT as a nonprofit to help support research and the use of helpful technology to assist the autism community."
Oberleit says, "Some goals we have tonight are to 1) bring a little more awareness about the role for telemedicine to treat and research autism 2) excite some people on the possibilities of using telemedicine, by seeing what's working elsewhere and 3) discuss some of the related issues 4) answer any of your questions, or hear your comments on use of telemedicine. We'll keep it less than an hour."
Oberleit says, "research and the use of helpful technology to assist the autism community."
Oberleit says, "For those of us in the chat coming from telemedicine industry and new to autism, Ö"
Oberleit says, "Once believed to be rare, and a shameful result of 'refrigerator moms' causing children's withdrawal (in the 1940's thru '60's), autism is now proven to be a devastating neurological based disorder that usually causes the regression of a normally developing child after 1 year of age, to a point of losing his/her communication, ability to properly socialize, and with unusual and detrimental ritualistic behaviors. Autism is the classic term, but other terms one might hear are Aspergers, Retts, PDD - NOS, depending on how checklists are . the autism spectrum of disorders remains complex, and varying diagnoses or missed diagnoses are not uncommon."
Oberleit says, "To describe how this regression appears in a toddler is fairly 'indescribable' for a parent (hence where telemedicine will help - more of that in a minute). Then, as the child grows older, trying to define and mobilize to address worrisome bizarre or scary behaviors (head banging, a seizure?, tantrums) especially for those children who cannot communicate what's bothering them, are other stresses parents deal with regularly."
Oberleit says, "BTW - I'm proud of my typing skills so far.."
Oberleit says, "First step to doing something is recognizing it early, and getting early childhood intervention started (strict educational therapies is one proven treatment that does help)."
Oberleit says, "With causes unknown, treatments to hopefully lead to a cure are varied and unproven. This leads desperate over-stressed families on endless journeys to different professionals (who are regionally located and over-booked), treatment programs, and a variety of other sources to pursue a cure or at least improvement."
Wawa says, "Oberleit, you must be taking typing lessons!"
Oberleit says, "thanks Wawa"
Oberleit says, "A related paradox is that many autistic people do not travel especially well, have problems getting accustomed in new places, and don't deal well with places like crowded lobbies."
Oberleit says, "Parents frequently 'over-visit' doctors to rule out common things like earaches, sore throats, or dental pain - because these children are in obvious discomfort, but you cant' figure out what. In our family's experience, Robby goes to the family doctor at least 2x that of our children for regular 'ruling-out' check-ups."
Telemed-Kvedar enters.
Wawa says, "or just waiting in waiting rooms"
Moderator says, "welcome telemed kvedar"
Oberleit says, "With diagnosed autism increasing over 60% in the last 6 years, autism is no longer rare, and some have estimated this to be the most quickly growing health issue today. Time Magazine's recent cover story (May 6th) on 'exploding' numbers of new autism diagnoses confirms that the public is just starting to recognize this growing health crisis"
Oberleit says, "Dr. Kvedar - thanks for joining us. Dr. Kvedar runs Partners Telemedicine in Boston, MA"
Telemed-Kvedar says, "nice to join you. sorry to be late"
Oberleit says, "I'm giving some background on autism, then telemedicine, then we'll throw some ideas to combine the two"
Oberleit says, "For those of you from the autism community (probably most of us), what you might not know is that there has been a growing movement and development of 'telemedicine' solutions to improve delivery of health care while actually reducing overall costs"
Oberleit says, "Simplest definition I like is: telemedicine is using technology to provide medical care 'at a distance'."
Oberleit says, "A little more elaborate is American Telehealth Service Provider's 2001 Report on U.S. Telemedicine Activity , which states Telemedicine" refers to the use of electronic communication and information technologies to provide or support clinical care at a distance. It combines telecommunications, instruments, and many times computers & the internet to allow doctors and other health professionals information to be able to more effectively intervene with patients and their families."
Onegary enters.
Oberleit says, "Telemedicine Technologies are usually designed to communicate medical information in real time (synchronous) or 'store and forwarded' (asynchronous - easy example perhaps is sending an Email with an attached picture or video clip)"
Oberleit says, "Examples of telemedicine applications:"
Moderator says, "hi Onegary"
Oberleit says, "o>Phone call to a doctor to describe the problem (just to demystify the term a bit)"
Oberleit says, "o>Email with a picture or video clip"
Oberleit says, "o>Sending a video in the mail for health professional"
Oberleit says, "o>Sending a radiology scan via the internet for an experienced radiologist to review, no matter where he / she is"
Oberleit says, "o>Digital stethoscope sending heart rate electronically over the phone line"
Oberleit says, "o>(Really new) Patients swallowing pills that can detect their various vital signs that a researcher can read in another country!"
Oberleit says, "My personal favorite example is the continued success the prison system programs that have been used are showing (and I'm paraphrasing, so don't hold me to this verbatim):"
Oberleit says, "Through a generous grant program, psychiatrists discovered when they did 'Psych Counseling' for inmates using video conferencing instead of driving the inmate / patient downtown to the psychiatrist's office , they saw benefits in quality of care because the patients appeared to be more natural in his own environment (cell)."
Oberleit says, "Hint - those here that know autism can identify all too well that autistic children do not behave like themselves frequently when they visit doctor offices."
guest111 enters.
Oberleit says, "Any questions or comments so far, or should I go on to suggest some connection between"
Moderator says, "hi guest, welcome to TalkAutism"
Oberleit says, "Autism and telemedicine"
Oberleit says, "Empirically, (a growing number believe that) the autism community and its medical professionals may be the most beneficial population that could be served by telemedicine."
Oberleit says, "Presently, the autistic individual, families, caregivers and even school teachers suffer in solitude during health issues an autistic patient might have. I refer to these as episode (unexplained crying, tantrums, self-injuring acts etc.) ."
Oberleit says, "It is difficult to effectively intervene to help the special needs child's condition medically immediately. Phone calls to experts results in inaccurate description of the condition many times, and immediate action to help is often not possible until a medical professional sees the child's etiology first-hand. By the time a patient is brought in, these episodes have passed."
Wawa says, "Ron, given many individuals with autism are nonverbal, isn't telemedicine impractical for many?"
Oberleit says, "We need a better way to convey these 'crises' moments to get intervention earlier or less blindly. Medical professionals can benefit from this more to be able to have objective data regarding their patient's presentation, vs deferring or blindly prescribing something."
Oberleit says, "great question Wawa."
Oberleit says, "it's esp the nonverbal where i think telemedicine has a key role"
Oberleit says, "it's they that cannot tell their parents if their throat hurts, they have an earache"
Shabach says, "sorry if i did not understand but i was away for a while"
Shabach says, "what really is autism"
Oberleit says, "a camera in the child's ear can take a picture that a doctor in another place can determine if it warrants a visit or not"
Oberleit says, "Autism in a nutshell (which is very hard to define)"
Oberleit says, "a devastating neurological based disorder that usually causes the regression of a normally developing child after 1 year of age, to a point of losing his/her communication, ability to properly socialize, and with unusual and detrimental ritualistic behaviors."
Onegary leaves.
Shabach says, "i see so it affects the brain"
Oberleit says, "We need a better way to convey these 'crises' moments to get intervention earlier or less blindly. Medical professionals can benefit from this more to be able to have objective data regarding their patient's presentation, vs deferring or blindly prescribing something."
Shabach says, "and causes failure to the entire body"
Wawa says, "another question: I thought state laws prohibit an MD in one state from practicing in another state. Can telemedicine cross state lines?"
Chet enters.
Oberleit says, "Shabach --it can affect the whole body and doc are still trying to figure it out"
Shabach says, "so this thing attacks the nervous system"
Oberleit says, "Wawa -- interstate licensure issues are one of several issues being worked out now in the telemedicine field"
Oberleit says, "it's a gray area , which is being worked out."
Moderator says, "hi Chet, welcome to Talkautism"
Onegary says, "do you see schools using this technology with speech therapists, ots etc"
Oberleit says, "Dr. Kvedar is on the American Telemedicine Association board."
Oberleit says, "Dr. Kvedar - donít mean to put you on the spot"
Oberleit says, "but comment on interstate licensure"
Wawa says, "how are insurers/HMOs/PPOs at covering telemedicine?"
Oberleit says, "It's becoming increasingly accepted in certain applications - re. insurance question"
Telemed-Kvedar says, "with regards to interstate licensure, we currently offer consultation in 44 states. we do this by working with the patients local doctor. most states allow consultations between providers across state lines"
Oberleit says, "dr. kvedar - can you help us understand how Partners Telemedicine operates , who it serves, any mental health applications working?"
Shabach says, "hey Iím leaving thanks for the information"
Shabach leaves, heading for Sidelines (high risk pregnancy support).
Oberleit says, "Onegary -- the speech therapy application to monitor a child's progress, to trial therapy, etc. has great promise"
Telemed-Kvedar says, "any patient, in collaboration with their doctor can obtain the advice of one of our 4000 specialists using our website, www.partners.org/econsults."
Wawa says, "gotta run! great topic and chat!!"
Oberleit says, "Could somebody pursuing autism services tap into Partners today?"
Telemed-Kvedar says, "in terms of mental health, we have several providers who are interested in doing consultations. I must confess that our autism experts are REALLY busy with patients who are in their offices, but we can handle limited volume"
Moderator says, "thank you for coming Wawa"
guest111 says, "How many doctors and what type are interested"
Telemed-Kvedar says, "yes, we could take cases today. remember, though it is in collaboration with a local MD"
Wawa leaves.
Oberleit says, "a growing number. Many are seeing that things like videos at the time of episode vs the unproductive face -to face visit."
Telemed-Kvedar says, "we have 500 core registrants in our physician database and access to 4000. I'm not sure how many of those providers are mental health, but my guess is around 50"
WorriedDad says, "Are these videos archived?"
Telemed-Kvedar says, "anything that is part of the medical record is securely archived, in our system, according to the same regulations governing a medical office record system"
Oberleit says, "what type? From psychiatrists following up on medication given. to dentists review dental scans, to many other who see that information provided when there is an episode is given is more helpful"
Oberleit says, "can we talk a little, Dr. Kvedar, about the value of having this securely archived medical record."
Oberleit says, "it's my contention that this archiving of behaviors on an autistic child's medical record would be invaluable"
Telemed-Kvedar says, "at some point, of course, the patient will have access to this info for transport anytime, anywhere to follow his/her medical needs. we don't claim that just yet"
Onegary says, "I know for one my sons behavior is videotaped for his doctors review, to be used in designing treatment. My insurance company has always paid for the review of these tapes as a consultation. It has been such a help as Chris is just not himself at Dr.'s"
Oberleit says, "good point Onegary. Reimbursing for video review I don't think is common"
Telemed-Kvedar says, "when you visit a provider and (s)he writes about behavior in the record that is a crude form of archive. a video would be a much more robust and objective version of same"
Oberleit says, "and with researching the value of this videotape review might be just what reimbursement needs."
Oberleit says, "this type of research is what we want to promote, proving if it's helpful, that it warrants further reimbursement."
WorriedDad says, "Do telemedicine physicians have access to existing med records of the tele patients?"
Telemed-Kvedar says, "we get whatever records the referring physician provides us"
Oberleit says, "this reimbursement issue is one of the areas that is improving in the use of telemedicine"
Onegary says, "Just from an advocates point of view, a video showing the progress your child is making with a treatment ot therapy greatly increases the likelihood that school will not change program"
Oberleit says, "What do you mean Onegary?"
Oberleit says, "Will not change program, that is..."
Oberleit says, "There are several autism clinics who are experimenting with standard ways of making diagnoses via video..."
Onegary says, "if you try for instance verbal behavior or other new therapy at school and document progress on videotape, it is powerful tool if you need to go to mediation with the school if they try to not provide Childs needed service"
Oberleit says, "making assessments on medication via video and / or photo"
Oberleit says, "gotcha, Onegary -- good point"
Oberleit says, "Technology and networks established by companies like Partners provide a connection and a data basing ability we do not have on a broad scale yet for autism"
WorriedDad says, "What steps would one take to support telemedicine for Autistic patients? Are there any beta sites?"
Telemed-Kvedar says, "this is true, but having said that, we strive to work with the lowest common denominator of technologies."
Oberleit says, "providing autism better access to care (parents know sending a video is as telling as traveling the 100 miles to sit in an office)"
Oberleit says, "and providing doctors with better info"
Telemed-Kvedar says, "Iím not sure what you mean by a beta site?"
Oberleit says, "one thing families have to grasp is that we might need to pay privately for this convenience' of sending video than personally visiting"
WorriedDad says, "Any patients currently being treated to see if this is effective?"
Oberleit says, "re. beta site eval for autism, my recommendation is to tape and photo your child's progress and problems as much as possible."
Telemed-Kvedar says, "we have a great deal of data on effectiveness of online consultation across a wide swath of diseases. admittedly, the specific data on autism is light. it would be worthwhile to do some studies"
Oberleit says, "how does Partners see the use of store and forward vs. real time consultations, Dr. Kvedar?"
Onegary leaves.
Telemed-Kvedar says, "real time is very close to being in the office and therefore feels familiar to those involved. it is, however, time consuming and inefficient. the value of store and forward is that it allows all participants to view data in a time an d place independent manner and increases efficiency greatly"
Oberleit says, "What seems exciting for autism applications is that we see store and forward being extremely helpful for 90% of the interactions,"
Oberleit says, "this makes it very reasonable for the many interactions to be done cost effectively vs. real time video"
Oberleit says, "For others who think we're talking in terms of computers, the National Rehabilitation Hospital has presented on the use of videophones for provide teleconsult to a family in Guam from their hospital to advise a family on handling an autistic child (thanks to Dr. Trepagnier's work here)."
Telemed-Kvedar says, "I think that is the take home message, Ron,. I have to leave. thanks for inviting me. this has been great. let me know when you do this again"
Moderator says, "thanks you for coming DR. kvedar"
Oberleit says, "thanks so much - Dr. Kvedar."
Oberleit says, "take care"
Onegary enters.
Moderator says, "wb Gary"
Oberleit says, "let me close this formally as well by saying..."
Telemed-Kvedar leaves.
Oberleit says, "telemedicine can facilitate better handling and treatment of autism while reducing cost to society, and providing professionals better information to help treat this devastating development disorder. Telemedicine can help mediate autistic people's inability to communicate medical problems, and having extreme troubles in new environments such as medical offices."
Oberleit says, "We need to attract grant monies , telemedicine partners etc. to give autistic people better care, give docs better information"
Oberleit says, "and storing better objective data for needed analysis in the future for more effective treatments"
Oberleit says, "Thanks for the good questions, and comments."
Oberleit says, "Thank you Ms. Moderator -- great job"
WorriedDad says, "Thanks for your efforts Oberleit, goodnight"
Moderator smiles
Moderator says, "Thank you everyone for coming!"
Chet leaves.
Oberleit says, "Good night..."
talkAutism.org
 


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