Robert Zori, MD

Professor & Chief, Division of Pediatric Genetics & Metabolism

University of Florida

TELEGENETICS: PROVIDING SPECIALIST SERVICES TO UNDERSERVED AREAS

Who we are:

• Division of Genetics at University of Florida is one of three Centers providing genetic services to State funded patients in Florida (along with University of South Florida and University of Miami).

UF Pediatric Genetics

Telemedicine sites –outreach sites

Telemedicine sites –new sites

Catchment area

What we do:

• Diagnosis of patients with birth defects, intellectual disabilities, inborn errors of metabolism

• Lifelong treatment of metabolic disorders identified through the Newborn screening program

• Genetic counseling for future pregnancies, risks for other family members, support and anticipatory guidance

Why we are interested:

• Access:

• Catchment area is large & underserved

• Need for more frequent monitoring of fragile patients

• Economics:

• Patients are low income and have difficult time traveling

History in Telemedicine:• Providing telemedicine evaluations since 2005

• Published the first evaluation of the effectiveness of dysmorphology exam by telemedicine (Stalker et al, 2006 J. Telemed. Telecare 12(4):182-185.

• Evaluated patients via telemedicine then re-evaluated in person.

• No new diagnoses on re-evaluation

• No incorrect diagnoses

• High degree of patient satisfaction

• High degree of provider satisfaction

• Would refer family & friends

• Prefer telemedicine to travel or waiting longer

Tele-genetics: Levels of Service

• Primary care level:

• Provision of clinical genetic, genetic counseling or nutritional counseling in the primary care office/CMS office

• Home evaluation (? Method of reimbursement)

• Secondary care:

• Consultation with other specialists for consultation

• Tertiary care:

• At the Hospital inpatient level NICU/PICU

Current Telemedicine Methods:

• At CMS offices and Hospital level:

• Polycomm system with hand-held examination camera at the patient end to either a Polycomm unit or Polycomm real presence at the Physician end.

• At Specialists office or Primary care:

• Vidyo desktop connection to an iPad at patient end OR

• Cisco Telepresence connection at both ends

• iPad at the distant site allows the least expensive, most flexible connection for intermittent/unplanned evaluations or for ultimately providing in-home follow up services

Current Tele-genetic Programs:

• Primary Care:

• Clinical follow-up:

• Discussion of test results, nutritional/metabolic management or genetic counseling provided in between outreach clinics which allows for rapid communication with families

• This program is now in use by the other 2 CMS genetic service providers (USF & UM)

• Newborn screening:

• Initial contact with families identified through the metabolic newborn screening program to discuss the diagnostic workup and potential treatments

Current Tele-genetic Programs:

• Primary Care:

• Genetic Counseling:

• Genetic counseling regarding established diagnoses from clinic

• Providing genetic counseling to the Cystic Fibrosis Newborn screening programs in Florida, Connecticut, West Virginia & Utah- clinical & research component

Current Tele-genetic Programs:

• Secondary care:

• Specialty Clinics:

• Monthly neurogenetic clinics in Pensacola with Neurologist at the patient site

• Florida School for the Deaf and Blind

• Autism clinics

• Craniofacial clinics

• Retinal clinics

Current Tele-genetic Programs:

• Tertiary care:

• Inpatient consultations in NICU & PICU:

• Consultations in the NICU/ PICU

• Reduce medivac transportation of critically ill patients

• Immediate genetic counseling and family support

• Fee for service payment

Conclusions:

• Tele-genetics works for evaluation of patients

• Well received by families and providers who are motivated

• Provides opportunity for specialist collaboration/ bedside teaching

• Technology is easier and better

• Billing mechanisms improving

Future Projects:

• Tele-specialty Clinics:

• multidisciplinary tele-specialty CMS clinics - statewide

• Enhance services NOT currently available

• On site guided physical exams directed by specialists at the distant site

• Allows multidisciplinary conferencing on medically complex patients

• Cost effective sharing of service

Challenges Expanding Tele-Specialty Clinics

• 1. CONVINCING PHYSICIANS

• Why should I do this?

• Common physician concerns:

- Time commitment

- Liability insurance

- Effect on RVU target

- Billing

- Reimbursement

- Documentation

- Physical Exam

• Schedule “appropriate” patients for physician

• Test with physician before clinic

Challenges Expanding Tele-Specialty Clinics

• 2. Scheduling Models:

(A) TRADITIONAL MODEL

Single physician schedules monthly clinic at single CMS site

CMS Site

Dr. A

Physicians and CMS understand the model, which requires no new systems- but it does not take advantage of telehealth’s flexibility. State of Georgia uses this model.

Challenges Expanding Tele-Specialty Clinics

(B) SINGLE PHYSICIAN MULTI-SITE MODEL

Single physician schedules monthly clinic shared across multiple CMS sites

Dr. A

CMS Site 1

CMS Site 4

CMS Site 3

CMS Site 2 Ease of

scheduling for physician- but difficulty coordinating multiple CMS sites with potential for patient gaps.

Challenges Expanding Tele-Specialty Clinics

• 2. SCHEDULING

(C) SINGLE SITE MULTI-PHYSICIAN MODEL

Multiple physicians from multiple specialties schedule monthly clinic

at single CMS site

Dr. D

CMS Site

Dr. B

Dr. C

Dr. A

Can target complex patientswith multiplespecialistappointments-but difficulty coordinating physician schedules on same clinic day.

This is the model used for our pilot clinic phase, connecting multiple physicians to see one patient each at a single site.

Challenges Expanding Tele-Specialty Clinics

• 2. SCHEDULING

(D) MULTI-SITE MULTI-PHYSICIAN MODEL

Multiple physicians from multiple specialties schedule monthly clinic

at single CMS sitePatient can see multiple specialties while allowing physicians and CMS sites to fill schedule gaps by parallel distribution of scheduling all over state of Florida. This model used by private group in Georgia.

Given multi-institutional EHRs, this would require a third-party centralized scheduling database where physicians and CMS sites can block out available hours simultaneously

D

B

C

A1

43

2

Physicians’ Comments

What- if any- is your primary hesitation about seeing more telemedicine patients in the future?

• “The liability to the institution related to not be able to perform a complete…examination and missing a diagnosis.” [sic]

• “Physical exam seemed 'awkward'...I still prefer 'personal interactions' (reason I became a 'doc’)”

• “…Patient selection is important. I think this would work better for patients with uncomplicated problems (with straight forward management; eg. constipation, GERD). It may also be useful for uncomplicated patients who are being seen for long-term management post liver transplant (where visits are usually pretty straight forward).”

• “I am not interested in seeing more telemedicine patients.”

Preliminary Findings

•Challenge remains convincing physicians.

•Primary predictor of participation is attitude towards telemedicine prior to first hands on experience

•Patients generally enthusiastic

•Disconnect between patient satisfaction and physician satisfaction

Patient Encounter from Pilot Clinic