"To me, it's all about knowledge"
By William Sanchez & Liz B
October was an exciting time for heny. We've been building for several months and had finally launched the beta version of our patient-focused mobile app, de-bi. Of course we had to celebrate, so we threw an exclusive app download party with one of our favorite patient communities, 412 Thrive.
I really look forward to these types of gatherings because I always get to meet such inspiring people with incredible stories to share. and this time was no different.
Meet Liz, an unfamiliar face for many of us at the time.
This was Liz's first 412 Thrive event as she had only recently been diagnosed with early stage DCIS (Ductal Carcinoma in Situ) with surgery scheduled in the coming weeks. Her demeanor as she shared her story definitely left an impression. Within just a few months of receiving life-changing news, she carried herself with a certain tenacity, prepared to take on anything that comes her way.
At our event, Liz told us that our project reminded her of "The Immortal Life of Henrietta Lacks" by Rebecca Skloot. When she was being diagnosed, she took our survey. The survey questions reminded her of Henrietta Lacks’ story, which she had learned about earlier in the year. She said about our app, “to me, it’s all about knowledge… I want to be recognized, the acknowledgment of like, yes, that’s my sample.”
For those of you who aren't aware, our company name is actually based on Henrietta Lacks as her story greatly inspired the work that we do. So needless to say, we were ECSTATIC to have a brand new user make this connection on her own. A small validation from the people who we're building for that helps us know we're on the right track.
FAST FORWARD 6 WEEKS LATER
Our team had a chance to check back in with Liz, and I'm happy to report that her surgery went well, they removed the tumor in its entirety, and she's on her way to a complete recovery.
We were also pleasantly surprised to discover that her donated biosamples from surgery only 2 weeks prior have already been distributed for multiple research projects!
This turn-around time is pretty unusual as samples could potentially be stored for decades before finally being acquired for research (if ever). However, Liz happens to have some other health conditions that make her samples 'more valuable' for immediate use in existing protocols.
Thinking back to just 2 months ago, Liz would have no way of ever knowing what came from her biosample donation nor share in the value or benefits of her personal contribution to science. But, through de-bi, a digital representation of those samples currently sits in her Biowallet, and she has a front row seat at the table.
This initial re-connection of patient to their donated samples is a powerful first step towards unlocking the true potential of research and enhancing the benefits to all involved.
We build to serve our patient communities. Our journeys intertwined with theirs.
Dec 12, 2022