Since 2009, WeHaveAFace has been advocating for Huntington's and Juvenile Huntington's disease by harnessing a technological and multimedia approach. Our philosophy was simple - utilize the strengths of our organization to broaden awareness of this disease. We continued with this methodology for over a decade, continually listening to the needs of our community. Throughout the years the single most inquiry from our community was the need to connect with medical professionals, social workers, and our research communities. Simply, patients and families needed help and advice in a timely fashion. Moreover, many patients and caregivers are unable (and are still unable) to participate in vital Huntington's studies and trials. Our incredible medical professionals are entirely aware of this problem. So, what could WHAF do about this?
On June 10, 2017, at our 2nd annual convention in Orlando, Florida, WHAF discussed this problem. We openly addressed the concerns of our community and launched WeHaveAFace Connect. Dr. Herwig Lange (George Huntington Institute - Munster Germany) decided that we should pilot this program to being constructing a mechanism which would help the HD/JHD community. We had been using a fantastic product called elVi: Electronic Visit.
Timing is everything. CompuGroup Medical (CGM), (owner of elVi), saw that WHAF was successfully using this product for our disease-oriented group. One of the most valuable strengths of WHAF is that we are proficient in a vast array of software, and we comprehend and practice privacy and security in our daily activities. WHAF has skilled IT professionals and App Developers (Founder and President of WHAF USA, James Valvano, Vice President of WHAF USA, Ian Torrington, and President of WHAF UK, Daniel Heath), who work diligently to find the best products and services to offer to our Huntington's community.
When planning to utilize a "telemedicine" product which will connect our community with medical professionals, social workers, and research groups, it is paramount that the following should be in question:
- Is the product secure?
- Does the product adhere to privacy rights?
- Does the product and company house/keep the personal information of the user?
- Does the product/company ask for, or require too much user information?
- Does the product offer a robust platform - streamlined across all iOS and
- Are the developers listening to their users, and are they willing to "push"
updates of the product in a timely fashion?
- Does the company provide timely and friendly support?
- Is the product available in multiple languages?
- Is it free for patients and caregivers?
- Is the pricing structure for medical professionals, social workers, and
research groups cost effective?
There are many additional questions an organization should ask before adopting a product of this magnitude for any disease-oriented group. WeHaveAFace is pleased to announce that we have found, and back the right product!
elVi: Electronic Visit for Huntington's Trials and Studies, Social Workers, and Medical Professionals.
WeHaveAFace and CompuGroup Medical understand the current requirements and regulations of the FDA (The Food and Drug Administration) pertaining to data collection, privacy, quality controls, etc.; however, we must be diligent in pressing forward with tools that will indeed benefit patients and research studies. We must advance trials and studies by harnessing technological advancements.
Too often, WeHaveAFace receives many inquiries from our patients and families who are in need of support from social workers. On many occasions, social workers are bogged down with huge caseloads, which inevitably leads to patients falling through the cracks. Moreover, many patients and caregivers are unable to leave their homes. By utilizing elVi, social workers can now connect instantly with patients and families on-demand.
WeHaveAFace has many close relationships with medical professionals around the world. Our patients and caregivers sometimes face challenges such as not being able to see a doctor in a timely fashion, especially with many unexpected situations Huntington's and Juvenile Huntington's disease brings on a daily basis. Now, participating medical professionals can "see" their current patients (or new patients), on-demand for follow-up appointments, send/receive documentation, or to give advice in acute situations. WeHaveAFace and CompuGroup Medical will always recommend that a patient or a caregiver call 911 in all emergencies that are time-sensitive!