Members of Ben’s Friends patient communities can soon take advantage of a state-of-the-art  technology that will enable them to manage their medical information in a secure multilingual digital tool, give them access to an online referral service for physicians and clinics, and let them participate in research that will benefit the rare disease community.

Ben’s Friends is partnering with Backpack Health to provide a custom data management app to its patient-members and their caregivers. 

Initially targeting the Psoriatic Arthritis and Lyme Disease communities, this partnership is set to eventually come up with a customized tool for each of Ben’s Friends patient communities. 

This app will be made available for free on iOS, Android and web.

Finding the best partner

Co-Executive Directors Clasina Field and Tom Lambdin have been on the lookout for this kind of technology for several months, attended no less than three big conventions, and vetted dozens of possible partners until they have found the one that meets their standards.

The idea of creating Backpack Health came out of its founders’ experiences with addressing a loved one’s health care needs. Mark and Diane Goldman’s son and Backpack Health’s CEO Jim Cavan’s niece had difficulties managing their health records especially when having to seek medical care while abroad where tons of information has to be translated into a foreign language. 

“Jim and his team created this tool because of what a loved one had to go through. We know how close meeting the patients’ needs is to their heart,” Clasina said talking about the partnership. 

“We want to partner with someone who will provide service to our members from the heart. And we found that in Backpack Health. We want only the best for our patient communities.”

Ben Munoz, President and Co-Founder of Ben’s Friends, underscores how the team values patient education. “At Ben’s Friends, we promote education and awareness, and encourage members to take control of their health information. It’s important to us that Backpack Health values the same.” 

Patients’ benefit from the app

To really be able to find out how invaluable this tool is before rollout, Tom and Clasina took the lead in using Backpack Health. 

Clasina recently signed up to Backpack Health before going on a trip abroad. “I was leaving on a trip, which gave me the ‘push’ I needed to complete my Backpack profile. When I had finished entering my basic ‘share card’  information including detailed medication info, and my provider details, I installed the unique link to my Backpack record on my phone lock screen. It’s all set up. I was ready to travel in no time!

Had she known Backpack Health earlier, she wouldn’t have had to go through a difficult experience while in a country where English is not the first language.  

“One time, while in Germany, I was feeling poorly and I went to a hospital where the doctors barely spoke English. I tried to remember, and then failed to have them understand which medications I was taking. What a challenge, especially if you aren’t feeling well. I would have LOVED having my health record share card instantly translated into German.”

The Backpack Health could have also been really helpful during Clasina’s recent trip to the UK.

“The other time, while in the UK, I had a terrible Meniere’s attack. That’s extreme dizziness and non-stop vomiting and retching. The paramedics made me give my medical information to a lovely person on the phone while I had my head in a vomit bag. If only I could have shown them the access codes, they would have had everything I decided to share right there.”

Tom, on the other hand, is set to have a heart surgery which is currently a very new procedure. To qualify for this, patients need to meet stringent requirements. 

Because of Backpack Health, the pre-op process has been a breeze. 

“To gather all the records and get them evaluated would have been weeks, if not months, to process. The Backpack app allowed me to upload EMR from a dozen sources with like 12 mouse clicks.”

Tom received replies from the health institutions in as fast as one hour after submitting the requirements through the app. He also didn’t have to go through the hurdle of setting up appointments just to sign countless releases. Instead, it was the heart institute who called him to set up a pre-op appointment. 

Making the app available to other communities

According to Jim, creating custom tools for the members of Ben’s Friends is something that the Backpack Health team is proud of and looks forward to.

Psoriatic Arthritis and Lyme Disease can be challenging to manage, and we are proud to tailor our digital tools to support both individuals and caregivers in their journeys with these conditions and look forward to working closely with Ben’s Friends to create additional support groups for its community members.”

Talking about the timetable for this project, Clasina said, “We hope that we’ll have custom versions of Backpack available to all of our members early this year.  I’m really excited about it.”