Those living with Ehlers-Danlos, a collection of connective tissue disorders affecting one in 5,000 people globally, are now using telehealth and mHealth tools to improve what is often a complex care management routine.
People living with rare chronic conditions often have difficulty accessing the right care providers and resources. New telehealth and mHealth platforms aim to help them and their doctors and nurses improve that process.
The Ehlers-Danlos Society this week announced a partnership with telehealth vendor Backpack Health to improve care management for the estimated one in 5,000 people worldwide living with this group of connected tissue disorders. Through the partnership, those affected by the disease and their caregivers can collaborate on Backpack Health’s connected health platform – and connect with researchers studying the disease.
“There remains a gap in research and understanding of Ehlers-Danlos syndromes, hypermobility spectrum disorders, and the associated symptoms and conditions that can occur, which leads to treatment mismanagement and mistakes,” Lara Bloom, International Executive Director of the Maryland-based society, said in a press release. “By offering (Backpack Health’s) digital platform to our community, we are not only empowering users to take control of their medical information, but we are enabling them to contribute to medical research by joining the EDS and HSD Global registry via this platform. Using patient-reported information to populate shared experiences, we can further support our members by sharing insights on treatments and services with members and their health care teams.”
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The partnership creates an online database for care coordination and research, enabling those around the world to access resources they might otherwise struggle to find. It’s not unlike the digital health platforms championed by Apple through ResearchKit and the Android-based ResearchStack platform.
Backpack Health has done this before. Last year the company teamed up with the Marfan Foundation to open its digital health platform to those living with Marfan Syndrome and their care providers. Among other groups, the company has also partnered with the Oscar Mike Foundation to help injured veterans improve their care management and access rehab services.
The company’s president and CEO says telehealth enables those living with complex health issues and their care providers to gather hard-to-find and often complicated resources in one place.
“Often times individuals living with rare and chronic diseases require large medical teams, extensive treatment plans and health monitoring throughout their health journey, generating an overwhelming amount of data for patients and their care providers to manage,” Jim Cavan said in the press release. “Recognizing these challenges, we are committed to easing the medical journey for those living with Ehlers-Danlos and hypermobility spectrum disorders by centralizing and consolidating intricate and detailed health information so users can feel secure knowing that they always have their full and updated medical records on hand in a time of need.”
Such a platform also proves vital in daily care and medication management, particularly with chronic conditions that might require several different doctor’s appointments and medications.
Just last month, Innomar Strategies, an Ontario-based specialty pharmaceuticals service provider and a part of AmerisourceBergen, rolled out the Chronically Simple app, a web-based and mobile health service aimed at helping patients manage appointments, interactions with providers and medications.
The app was developed by Christy Dickinson, who lives with Ehlers-Danlos.
“After being diagnosed with a chronic illness, my life changed instantly,” she said in a press release issued by Innomar. “I was overwhelmed by all the paperwork, keeping track of appointments and staying in contact with my healthcare providers. There was a period in my life where I had binders of medical information that I took to every appointment. I knew there had to be a better way, so I set out to create an app to help me manage my healthcare so that I could be there for my family.”
Date: July 04, 2019
Source: mHealth Intelligence