Backpack Health, a health-tech company based in Boston, has partnered with two organizations specializing in rare diseases, Care Beyond Diagnosis and FYMCA Medical, to bring their mobile and cloud-based health management application to patients with rare diseases living in low-income countries.

Rare diseases can be significantly challenging for affected patients, with mountains of paperwork required to keep track of a condition and explain it to non-specialist medical staff, who may lack adequate knowledge and awareness of a specific malady.

These difficulties are compounded in a low-income environment, which may lack even basic medical care facilities and staffed by people who are inexperienced with rare diseases. Backpack Health offers a health management app within which patients with chronic and rare diseases can record their symptoms, store their medical history, track their progress, and share their data with family and medical staff.

This helps to cut through the paperwork that often accompanies a complex medical condition and makes it easier to explain a condition to new medical staff in the case of moving to a new city or country. The app aims to be user-friendly, provide patient empowerment, and also provides de-identified data for research projects.

It also allows patients to more easily share their symptoms with medical specialists, or even educate non-specialist medical staff about a rare disease, which could be very useful in remote, low-income settings.

See a video about the system below:

Medgadget asked Jim Cavan, CEO, and President of Backpack Health, some questions about the system and the new partnership.

Conn Hastings, Medgadget: How did you become interested in developing a health management system?

Jim Cavan, Backpack Health: Healthcare’s landscape has always been a challenge that excites me. The emotional reward that I receive from helping to mend the healthcare system is something that I love. My entire career has been in healthcare. Beginning at a young age, my love stemmed from volunteering with my town’s emergency response team. I worked my way through college and graduate school as a paramedic, continued on to consult for pharmaceutical companies and eventually ran a variety of research enterprises. At the same time, as I was advancing in my career in healthcare, my family was touched by a rare disease. This led me to see the healthcare system through a new, personal set of eyes that revealed complexity and challenges that I hadn’t seen before. I began to start putting the pieces together.

Medgadget: What are the challenges that patients with rare diseases face?

Jim Cavan: The obvious challenges of rare diseases patients are the symptoms of their disease. However, the challenges don’t end with a patient’s symptoms; they extend to managing their own health, affecting not just them but their caregivers as well. Many of the problems associated with medical centers and doctors are the issue of getting information. How does a caregiver, often a parent, get their child’s medical records? How does a parent share these records with different specialists, teachers, babysitters, and coaches? How does a parent make this information usable and accessible both for themselves and for other caregivers? The system of binders filled to capacity with files does not work. In a crisis, binders are difficult to navigate and are cumbersome. Flash drives are disorganized, but, even worse, what hospital allows you to put a flash drive into their network? And what happens when visiting a foreign country and files need to be translated?

These options are not viable when dealing with complex and rare diseases. This is where Backpack Health comes in– a patient empowerment tool that helps people with chronic, serious and rare health concerns, and their caregivers, better manage and access personal health information, care, and communication.

Medgadget: Why has this new partnership focused on low-income areas? What additional challenges does such an environment pose for people with rare diseases?

Jim Cavan:  Low-income areas are faced with the issue of lack of accessibility to healthcare. Low literacy, poor nutrition and social justice issues further highlight the need for access to care. When it comes to low-income environments, patients with rare diseases suffer the most. It is important for those living with complex conditions to be their own health historians, but it is even more critical for rare disease patients to do so in these areas. Empowerment comes from access to their health information and connecting with rare disease communities and resources globally.

Medgadget: Please tell us about this new partnership and your partner organizations.

Jim Cavan: Backpack Health is committed to helping both the general rare disease community as well as disease-specific communities. Our partner organizations are our family. Together, we work to bring patients the ability to store all health information and history as well as support medical research.

Specifically, our critical partnership with Care Beyond Diagnosis (CBD) allows patients in low-income and developing countries to have the ability to transform patients into educators of local non-expert health providers. This is especially important in developing countries where health providers may never have seen a patient with a specific rare disease.

CBD’s partner, FYMCA Medical Ltd., will work with Backpack Health to develop tools and assessments to further measure rare disease symptoms. This critical health data can assist with drug development and disease management.

Medgadget: So, how does the Backpack Health app work? How will it aid patients with rare diseases in low-resource settings?

Jim Cavan: Backpack Health’s mobile app is a cloud-based, multi-lingual tool that allows patients and their families to control their health journeys. The app, available for Android, IOS and offline, stores medical information, providing one centralized platform for patients to share, track and manage their health information. With their health information at their fingertips, patients are empowered to properly advocate for their own health. The app also connects users to disease-specific communities and resources and helps them easily contribute to critical medical research, with their permission, by sharing their information.

While there is a lack of accessibility to healthcare in low-income countries, smartphone accessibility is on the rise, helping to bridge the gap. With Backpack Health’s mobile app, these patients are placed at the center of their own care, allowing them to share their own management plan and educate non-expert health providers on their rare disease.

Medgadget: Is the system already available to patients in low-resource areas?

Jim Cavan: Backpack Health’s mobile app is ready to go! The app is already being used in over 70 countries. With appropriate affiliations in place, like our partnership with CBD, we have the ability to empower even more patients, putting them in control of their own health while facilitating their contribution to medical research. We are in a very exciting phase as we continue to expand our reach and impact.