Using a Novel Telemedicine Aid to Communicate

Clinical Research Findings

David Voccola david@prometheusresearch.com

About Me• Partner & COO at Prometheus

Research, a data management services company HQ’d in CT

• Experienced business analyst and software UI/UX designer

• Senior Analyst on the Simons Variation in Individuals Project (Simons VIP)

Financial Disclosures

• I am an employee and equity holder at Prometheus Research, LLC

• I hold stock in Apple, Inc.

About Simons VIP (sfari.org)

• Nationwide biomedical study of families with a very rare genetic mutation linked to an increased risk of autism spectrum disorder (ASD)

• “Clinical” sites perform thorough battery of psychological and neurological tests

• “Imaging” sites perform structural and functional MRIs

• Unique protocol that involves extensive participant travel

Simons Foundation (NY)

Columbia University (NY)

Harvard University (MA)

Baylor College of Med (TX)

Emory University (GA)

UC San Francisco (CA)

UW Seattle (WA)

Children’s Philadelphia (PA)

Geisinger Health (PA)

Challenge:!

How do we securely communicate incidental

findings to participants … after they’ve gone home?

+ +

Response:!THEN

That sounds complicated.

They’ll all get [broken / stolen].

Response:!NOW

Wasn’t it obvious?

Apple iPad• (Relatively) Inexpensive

• Easy to use

• Large screen

• Videoconferencing camera

• Wifi + Cellular data access

• Highly portable

• Lots of apps available

Apple iPad + Fuze• Videoconferencing and screen-

sharing service

• Easy to use

• Secure

• Web, desktop, tablet, and smartphone versions

• Free

Logistical Overview• Each Clinical site received an iPad 2 3G (4 total)

• Coordinators at each site were trained on iPad; Neurologists at each site were trained on Fuze

• When an incidental finding was made:

• The Clinical Coordinator would schedule a time for the participant to discuss the finding(s) with a neurologist

• The iPad was FedEx’d to the participant (sans charger)

• The neurologist used Fuze to share the relevant images on their local computer, and to communicate with the participant and/or their caregiver(s)

Cost Overview• iPad 2 3G for each site: $529 + tax (x 4) = ~$2,250

• Fuze Applications (Desktop and iPad): Free

• Shipping: ~$80 roundtrip (x10) = ~$800

• TOTAL: ~$3,050 for 10 uses

!

• Acquisition cost per-family = ~$25,000 (est)

• Cost of keeping family onsite = ~$1,000 - $2,500/ea

Survey Methods

• After ~1 year of piloting these procedures with each of the four Clinical sites:

• We sent each of the coordinators and neurologists involved a survey about their usage and experiences

Results

We heard back from at least one coordinator and one neurologist from each site …

!

!Who reported they hadn’t used the iPad much!

Results• Far fewer of our participants had incidental

findings than we were anticipating (N = 8)

• When findings were communicated:

• Fuze was used 100% of the time

• iPad was used ~66% of the time

• 100% of respondents indicated they would recommend this model to their colleagues

Conclusions• Secure videoconferencing

appears to be a viable option for remotely communicating sensitive topics to participants

• iPads appear to be a viable and efficient option for interacting with participant groups without access to traditional computers

• Participants can generally be trusted with the iPads

Would You Still Use iPads?• Additional disclosure: I’m a

bit of an Apple “fanboy”

• J.D. Power 2013 Tablet Satisfaction Survey

• iPad wins every category except price

• Samsung (Android) wins overall … by <1%