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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"
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
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,
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
Wawa says, "Oberleit, you must be taking typing
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
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."
says, "or just waiting in waiting rooms"
Moderator says, "welcome telemed
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,
Telemed-Kvedar says, "nice to join you. sorry to be late"
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
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."
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)"
"Examples of telemedicine applications:"
Moderator says, "hi
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
Oberleit says, "o>Sending a radiology scan via the internet
for an experienced radiologist to review, no matter where he / she
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
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."
Oberleit says, "Any questions or comments so far, or should I go on
to suggest some connection between"
Moderator says, "hi guest, welcome to
Oberleit says, "Autism and telemedicine"
"Empirically, (a growing number believe that) the autism community and its
medical professionals may be the most beneficial population that could be served
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
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."
"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
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
Oberleit says, "Autism in a nutshell (which is very hard to
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."
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
Wawa says, "another question: I thought state laws prohibit an
MD in one state from practicing in another state. Can telemedicine cross state
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
Oberleit says, "it's a gray area , which is being worked
Moderator says, "hi Chet, welcome to Talkautism"
Onegary says, "do
you see schools using this technology with speech therapists, ots
Oberleit says, "Dr. Kvedar is on the American Telemedicine Association
Oberleit says, "Dr. Kvedar - donít mean to put you on the
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
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
Oberleit says, "dr. kvedar - can you help us understand how
Partners Telemedicine operates , who it serves, any mental health applications
Shabach says, "hey Iím leaving thanks for the
Shabach leaves, heading for Sidelines (high risk pregnancy
Oberleit says, "Onegary -- the speech therapy application to
monitor a child's progress, to trial therapy, etc. has great
Telemed-Kvedar says, "any patient, in collaboration with their
doctor can obtain the advice of one of our 4000 specialists using our website,
Wawa says, "gotta run! great topic and
Oberleit says, "Could somebody pursuing autism services tap into
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
guest111 says, "How many doctors and what type are
Telemed-Kvedar says, "yes, we could take cases today. remember,
though it is in collaboration with a local MD"
"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
WorriedDad says, "Are these videos archived?"
"anything that is part of the medical record is securely archived, in our
system, according to the same regulations governing a medical office record
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
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
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
WorriedDad says, "Do telemedicine physicians have
access to existing med records of the tele patients?"
"we get whatever records the referring physician provides us"
"this reimbursement issue is one of the areas that is improving in the use of
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"
"What do you mean Onegary?"
Oberleit says, "Will not change program, that
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"
"making assessments on medication via video and / or photo"
"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"
"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
Oberleit says, "providing autism better access to care
(parents know sending a video is as telling as traveling the 100 miles to sit in
Oberleit says, "and providing doctors with better
Telemed-Kvedar says, "Iím not sure what you mean by a beta
Oberleit says, "one thing families have to grasp is that we might need
to pay privately for this convenience' of sending video than personally
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
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
Oberleit says, "how does Partners see the use of store and
forward vs. real time consultations, Dr. Kvedar?"
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
Oberleit says, "What seems exciting for autism
applications is that we see store and forward being extremely helpful for 90% of
Oberleit says, "this makes it very reasonable for the many
interactions to be done cost effectively vs. real time video"
"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
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"
says, "thanks so much - Dr. Kvedar."
Oberleit says, "take care"
Moderator says, "wb Gary"
Oberleit says, "let me close this
formally as well by saying..."
"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
Oberleit says, "Thanks for the good questions, and
Oberleit says, "Thank you Ms. Moderator -- great
WorriedDad says, "Thanks for your efforts Oberleit,
Moderator says, "Thank you everyone for
Oberleit says, "Good night..."