Telemedicine Applications in Clinical Genetics

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

Current Uses of Telemedicine

In flight Space flight Ship to shore Armed forces Mount Everest,

Antarctica Disaster areas 911 & ambulance

Current Uses of Telemedicine

HomeCare Wellness TeleMonitoring programs RX Reminder Electronic Medical Records

(EMR) TeleCase Management GPS Tracking

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

B. Schaefer

Other Genetic Uses of TM

Family counseling Multi-site (same info)

Monitoring therapy Metabolic disorders

Support groups coordination

Genetic Uses of TMEducation

Degree program Mid-America Genetic Education

Consortium (MAGEC) Team training

LEND Continuing education Patient education Public education

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

Genetic Uses of TMAdministration

Interview job applicants Meetings

Board, Committee, SIG, Regional, State

Orientation and staff development Compliance

Nebraska: 1995 - 2008

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

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:

Statewide Telehealth Services for Children with SHCN

1) Participation in the IEP and IFSP processesA) 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).

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.

.

..

.Omaha

Winnebago

Kearney

Scottsbluff

Outreach ClinicsOutreach Clinics

FundingTitle V $150,000 Teratogen Project $110,000Appropriations $ 35,000 Outreach Clinics $ 73,000Total $183,000

[South Dakota $ 57,000] [ IHS contract $8000] [MHCP Clinics]

Rapid City. Pierre.

.(Cerebral Palsy)

Grand Island

(Cerebral Palsy)..North Platte

(Craniofacial)

2. EPDST Transition Project

Transition Consultation Resource collection Education of HHSS Service

Coordinators Physician Education (build capacity)

Faculty Community docs

Evaluation

Transition Consultation Interdisciplinary team

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

Transition Consultation

YSCHN 15 – 17 years old (ideal) 5 components

Initial visit (T1) Information gathering Concluding visit (T2) Medical Transition Plan Transition guidance / implementation

Health Care Transition Planning Process & Health Care Transition Clinic

Youth hears about clinic(SC, School Nurse,

Educator, etc.)

Youth & referring professional complete

paperwork & sendto CFC (in packet)

Referring professionalcalls CFC

CFC has recordsreviewed & schedules

appointment date

CSC contactsASC if

appropriateConfirmation letter& HC assessmentsent to youth &

source of referral

Clinic happens

Youth receives report with

recommendations

Assessmentsare completed

as needed

Transition plan is developed around

goals set at 1st clinic visit

2nd visit draft planis reviewed with

youth and finalized

Youth & family are

assisted in following their plan

(Referrals contacted, youth

linked with resources)

Resource Development

Physician resource notebook Individual planning resources

3. Flatlands Disability Network

4. Shriner’s Cooperative Agreement

5. Pediatric Behavioral Telehealth Services

6. Mid-America Genetics Education Consortium

7. Cosmic Services

Arkansas: 2008 - Present

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.

AR-Kids

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

UAMS Telemedicine Services

Telemedicine to 27 sites, adding 7 more this year

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

Opportunities

Overcome barriers to access for underserved populations Distance Complicated transport

Save time and money Expand services Unexpected advantages Have a lot fun

Avoid land travel

Telegenetics consults (demo)