Telemedicine Applications in Clinical Genetics

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Telemedicine Applications in Clinical Genetics
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Definitions

• Telemedicine is the use of telecommunications to
  provide medical information and services
• It may be as simple as two health professionals
  discussing a patient over the telephone, or as
  sophisticated as using satellite technology to
  broadcast a consultation between providers at
  facilities in two countries, using
  videoconferencing equipment or robotic
  technology.
• Telehealth is a broader term and includes
  telemedicine, electronic medical records, online
  drug pharmacies, and distance education (DE) for
  teaching and continuing education.
• Telegenetics is the application of telemedicine
  to clinical genetic services

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Current Uses of Telemedicine

• In flight
• Space flight
• Ship to shore
• Armed forces
• Mount Everest, Antarctica
• Disaster areas
• 911 ambulance

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Current Uses of Telemedicine

• HomeCare Wellness
• TeleMonitoring programs
• RX Reminder
• Electronic Medical Records (EMR)
• TeleCase Management
• GPS Tracking

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With current technology, any activity that you
can do in person can be accomplished as a
tele-genetics service

• B. Schaefer

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Other Genetic Uses of TM

• Family counseling
• Multi-site (same info)
• Monitoring therapy
• Metabolic disorders
• Support groups
• coordination

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Genetic Uses of TMEducation

• Degree program
• Mid-America Genetic Education Consortium (MAGEC)
• Team training
• LEND
• Continuing education
• Patient education
• Public education

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Genetic Uses of TMResearch

• Multi-site studies
• Clinical trials (CTSA)
• Inclusion of minority and rural patients
• Monitoring and compliance
• Evaluation of TM
• Patients with autism

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Genetic Uses of TMAdministration

• Interview job applicants
• Meetings
• Board, Committee, SIG, Regional, State
• Orientation and staff development
• Compliance

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Nebraska 1995 - 2008
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Examples of Services we have Provided

• Dysmorphology evaluations
• Confirmed by on-site follow up
• Genetic counseling
• Especially good for following up results
• Urgent NICU consultations
• Cancer genetics sessions
• Interdisciplinary team outreach
• Procedure supervision
• Participation in distant interdisciplinary team

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1. Statewide Telehealth Services for Children
with SHCN

• Multiple services can be provided through these
  links
• It is understood that each community has its own
  unique needs and desires for services to be
  utilized through such a network
• As such, a menu of services is available to
  chose from by the home communities. Below is a
  list of potential services that can be provided.
  This list is not comprehensive, but
  representative of possible applications

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Statewide Telehealth Services for Children with
SHCN

• 1) Participation in the IEP and IFSP processes
• A) MMI staff could perform the entire
  evaluation. We suspect that this would be
  necessary only on a temporary basis during times
  of need or crisis (summer hiatus, temporary
  suspension of team activities, etc.)
• B) MMI staff could participate in the IEP / IFSP
  processes with an existing team as a gap -
  filling member (e.g. an existing team is in place
  , but does not have a physical therapist)
• 2) Direct (primary) patient assessments . These
  services could be provided for any of the MMI
  disciplines (clinical genetics, genetic
  counseling, physical therapy, occupational
  therapy, speech pathology, child psychology,
  developmental pediatrics, nutrition, nursing
  (case management), social work, recreational
  therapy, and diabetes / endocrinology).

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Statewide Telehealth Services for Children with
SHCN

• 3) Discipline specific consultative services on
  difficult cases (available for all MMI
  disciplines listed above)
• 4) Continuing education / training. An ongoing
  series of special topics, issues in the care of
  CSHCN, and new updates would be provided. These
  activities would be open to a broader audience
  than those for direct patient services.
• 5) Quality assurance monitoring of local teams.
  This would include help with Federal compliance
  reviews, ongoing team monitoring, and technical
  assistance in the development of local QA
  activities.
• 6) Provision of quaternary interdisciplinary
  services only available in Nebraska metropolitan
  areas
• Speciality services in complicated disorders may
  only be found in Omaha and sometimes Lincoln.
  Even if the primary discipline is available to
  the patient, complex cases may require quaternary
  services. Examples of such services would include
  the interdisciplinary teams as well as services
  in sleep disorders, eneuresis / encopresis,
  autism and the neurobehavioral team.

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Outreach Clinics
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Pierre
Rapid City
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Winnebago
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Scottsbluff
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(Cerebral Palsy)
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Omaha
North Platte
Grand Island
Kearney
(Craniofacial)
(Cerebral Palsy)
Funding Title V
150,000 Teratogen Project 110,000 Appropriatio
ns 35,000 Outreach Clinics
73,000 Total 183,000 South Dakota
57,000 IHS contract 8000 MHCP Clinics
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2. EPDST Transition Project

• Transition Consultation
• Resource collection
• Education of HHSS Service Coordinators
• Physician Education (build capacity)
• Faculty
• Community docs
• Evaluation

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Transition Consultation

• Interdisciplinary team
• Consumer / Family Advocate
• Nurse
• Adult psychiatrist (dual diagnosis)
• Pharmacist
• Developmental Pediatrician
• Med-Ped physician
• Ancillary (Genetics, Dentistry)

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Transition Consultation

• YSCHN 15 17 years old (ideal)
• 5 components
• Initial visit (T1)
• Information gathering
• Concluding visit (T2)
• Medical Transition Plan
• Transition guidance / implementation

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Health Care Transition Planning Process Health
Care Transition Clinic
a
a
a
a
a
a
a
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Transition plan is developed around goals set
at 1st clinic visit
a
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Resource Development

• Physician resource notebook
• Individual planning resources

Coming soon to a DVD near you
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3. Flatlands Disability Network
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4. Shriners Cooperative Agreement
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5. Pediatric Behavioral Telehealth Services
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6. Mid-America Genetics Education Consortium
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7. Cosmic Services
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Arkansas 2008 - Present
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ANGELS

• A joint venture between The University of
  Arkansas for Medical Sciences, the Arkansas
  Department of Health and Human Services and the
  Arkansas Medical Society.
• ANGELS is an acronym for Antenatal and Neonatal
  Guidelines, Education, and Learning System.
• ANGELS has been an enormously successful program.
  
• ANGELS is designed to provide best practices in
  diagnosing and treating high-risk pregnancies,
  providing continuing medical education for
  Arkansas obstetricians and family practice
  physicians, and facilitating referrals of
  pregnant women with severe medical complications
  to UAMS for specialized care.

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AR-Kids
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NBS-ANGELS

• 10 project deliverables
• Guidelines/protocols monitored, assessed and
  modified
• Consultation for appropriate health-care
  providers
• Perform second tier screening components
• Development, education, refinement and
  dissemination of the Newborn Screening Follow-up
  guidelines/protocols.
• Develop database and reporting system
• Examine Medicaid claims data cost analysis
• Coordinate access to services
• Perform an evaluation to compare outcomes
• Develop the infrastructure and software to aid in
  identification and treatment and track case
  management of true-positive
• Augment provision of metabolic formulas and foods

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UAMS Telemedicine Services

• Telemedicine to 27 sites, adding 7 more this year

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Challenges

• 7 deadly words of program development
• Techno-phobia
• Administrative inertia
• Cost
• Lack of adequate IT infrastructure
• Lack of colleague buy in
• Where to go for answers

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Opportunities

• Avoid land travel

• Overcome barriers to access for underserved
  populations
• Distance
• Complicated transport
• Save time and money
• Expand services
• Unexpected advantages
• Have a lot fun

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Telegenetics consults (demo)