Date: 11/13/2014

Discover how FIRST is Reaching New Heights in Telemedicine

Telehealth is the delivery of health care using technology to link patients and care providers who are in separate locations in

either a synchronous or asynchronous fashion. It is an increasingly utilized and incredibly promising way in which to deliver care in situations where access is a problem.

Thanks to members of FIRST's Medical & Scientific Advisory Board (MSAB) and the Lennox Foundation, FIRST Tele-Ichthyosis is now available to dermatologists and other health care professionals to upload questions, documents and images for input and consultation from ichthyosis and related skin type experts. The site uses a store-and-forward teledermatology approach in a secure, HIPAA compliant environment to facilitate communication between dermatologists and other medical professionals dealing with this rare set of skin diseases.

But Tele-Ichthyosis 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. Below, Dr. Jonathan Dyer, a member of FIRST’s Board of Directors and MSAB, and one of the key physicians behind the development of this telemedicine program, discusses the evolution of the Tele-Ichthyosis site and the potential and vision for the future of telemedicine.

“In the case of rare disorders, three of the most common complaints I hear from patients are:

1.“Doctors never know what I have”;

2.“I know more about my condition than my care provider,” and

3. “There isn’t anyone in my region who knows about my disease.”

The Tele-Ichthyosis program was created to try to address those specific issues. It grew directly out of my experiences at the FIRST National Family Conferences and the fact that the University of Missouri, where I trained and now practice, was one of the first universities in the country to have an ongoing and functioning tele-health network. As a faculty member I established one of the very few live interactive tele-dermatology clinics in the country.

After attending a FIRST National Family Conference and seeing what an amazing resource the screening days were for both the patients and their families, as well as the expert team of physicians so committed to learning more about their disorder and how to better care for these patients, I wondered if store-and-forward teledermatology might offer a way to use technology to have a “family conference-like” visit, when it was needed - rather than having to wait for the next meeting. Several of the members of the FIRST MSAB discussed this online concept at that very conference, and the idea grew into reality soon after.

I believe the Tele-Ichthyosis program has been an incredibly worthwhile endeavor. It is a resource that is relatively unique - even among patient support organizations. At present it serves as a resource for physicians from all over the country (and beyond) and has helped many patients.

However, currently I envision what we presently have as a starting point. I think the technology can go much further. The old model of care delivery with a patient driving into a clinic (or flying, as I’ve had patients fly from quite far away to see me because of their skin conditions) is now just one way of doing things. More efficient modalities such as telehealth offer the potential of linking patients and providers (or teams of providers) all of whom may be physically separated by hundreds or thousands of miles.

Perhaps, one day, we’ll even be able to coalesce systems so that patients will eventually have an “online medical home”–a network of care providers across the country who not only see patients in their physical clinics but also weigh in on more complicated clinical issues as a group, much like we do on the site. Imagine a monthly or quarterly online “grand rounds-type” event where doctors are able to connect and weigh in on patients, or a 24-hour 7-day-a-week harlequin hotline for that rare surprise of the birth of a harlequin infant (or severe collodion). There is much potential and possibility with this type of technology and much hope for the future of telemedicine.”

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