TeleIchthyosis

FIRST Launches New TeleIchthyosis Portal!

Your Dermatologist Can Connect With Experts Remotely

Thanks to members of our Medical & Scientific Advisory Board (MSAB) and a grant from the Lennox Foundation, an all-new, relaunched FIRST Tele-Ichthyosis platform is now available to dermatologists and other health care professionals. This allows patients, with help from their local care provider, to seek input from ichthyosis experts in other parts of the country – or the world – without the costs, time and other burdens associated with traveling.

Providers can use Tele-Ichthyosis to upload questions, documents and images for input and consultation from ichthyosis and related skin type experts. The site uses a secure, HIPAA-compliant environment to allow communication between providers in different locations.

But, TeleIchthyosis offers more than a portal for doctors to connect and collaborate. It offers the promise that, one day, patients with ichthyosis and related skin disorders around the globe will have access to the care they need, at the time they need it the most.

It is now easier than ever for your physician to submit your case. After that, an expert is assigned to your case – and this step is now automated for faster service. The entire experience aims to be better for the submitting physicians and the medical experts to navigate, even including a chat option for the medical experts to confer.

This online portal takes us one step closer to closing the gap for those affected in the ichthyosis community. No matter where you live, patients and doctors can now have access to reliable, expert and cutting-edge information about these disorders. Be sure to share this very useful resource with colleagues and others.

TeleIchthyosis Portal Tutorial Portal Registration

TeleIchthyosis Portal Tutorial Case Submission

 

 

 

TeleIchthyosis Portal Tutorial Case Consultation for Specialists

FIRST is grateful to the Lennox Foundation for funding this project in memory of Dane Christian Phelps.

 

 


Use of Telemedicine for Ichthyosis: Patient Advocacy Group as Conduit to Expert Physician Advice


 

A true collaborative effort between FIRST's Medical & Scientific Advisory Board physicians and FIRST!

November 24, 2020

Pediatr Dermatol. 2020 Nov 23. doi: 10.1111/pde.14460. Online ahead of print.

 


ABSTRACT

BACKGROUND/OBJECTIVES: Patients with rare diseases are challenged when it comes to finding physicians with expertise in their condition. The Foundation for Ichthyosis and Related Skin Types (FIRST) Tele-Ichthyosis program has provided telemedicine for patients and their families with keratinizing disorders since 2009. This study aims to characterize a decade of experience with the program.

METHODS: This retrospective cohort study analyzed cases for demographics of patients and the clinicians who submitted their cases, nature of questions asked, number of expert responses, and characteristics of responses. Surveys were sent electronically to all users of the FIRST Tele-Ichthyosis service to assess experiences with the service and solicit constructive recommendations. Descriptive statistics were performed on the case review and responder surveys.

RESULTS: Eighty-eight geographically diverse cases were reviewed showing increased use over time by various specialists for patients of all ages. Sixty-six percent of cases were definitively ichthyosis, and most submitters queried on diagnosis (47%) or treatment (72%). Most submitters described the service as easy to use (66.6%) and advice as timely (61.1%), clear (66.6%), and beneficial (61.1%). All submitters made suggestions for improvement (100%). Experts predominately worked with pediatric populations (70%) and reported self-motivation to volunteer and improve patients’ lives (100%). Experts found technological barriers minor and provided feedback to enhance the service.

CONCLUSIONS: This report highlights how a rare-disease patient advocacy group successfully supports physician collaboration and patient outcomes through secure and efficient telemedicine. Lessons learned are highly relevant in the current healthcare environment.

 

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