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Monthly series featuring personal accounts navigating our healthcare system
Stephanie Iheme, 1upHealth’s VP of Customer Experience, recently shared her father’s journey with chronic lymphocytic leukemia (CLL), a diagnosis that deeply impacted her and her mother’s lives. In the face of the diagnosis, her mother took on the role of primary caregiver, navigating doctor visits, medications, and a mountain of paperwork.
Reflecting on the experience, Stephanie emphasized that digital access to her father’s medical record – a term now known as Patient Access – would have significantly eased the burden on her mother and improved her father’s care, had it been available at the time of his illness.
Stephanie brings to light the importance of seamless healthcare data access, highlighting its ability to enhance the well-being of patients and provide much-needed support to their families during trying times.
Transcript
So, my dad, because everyone has a story, right, everyone has a story. So, my father had chronic lymphocytic leukemia. And so, when my dad got the diagnosis for CLL, that was a devastating diagnosis. For the love of his life, my mom, CLL became her new full-time job. So managing the reams of paperwork and the prescriptions and the care plans.
I can still remember our kitchen table and a corner of it was devoted to the piles of paperwork as my father in the last four or five years of his life was ferried by my mom between oncology appointments, therapy appointments, appointments with his primary care physician.
And I think about one of our customers today. And their use case, which is so compelling to me, is putting a mobile app in the hands of families, like my mom, like my dad, where all of that clinical information is centralized.
And so my mom, who spent so many years being the advocate of my father’s patient journey, and always having to tell and then retell and then tell again the story of what his experience has been, what is his current arc of care in the current care plan – that would have been so much more easily experienced by them with the power of data. Less decentralized, more compacted in an application where my mom can essentially say, “let me bring you up to speed on what my husband’s care plan has been over the last 30 or 60 days,” and to do that without having to sort of fan out the paperwork on the physician’s desk and say let me walk you through it. And it’s very common for CLL patients to have multiple different care plans across multiple different care institutions and to have that data be less siloed and more easily accessible.
That’s part of why 1upHealth, what we’re trying to do, resonates with me personally. It’s not just a job, it’s a mission. And I knew that I was signing up for the mission when I joined. And so to get back to the question around like what types of customers that we have and why do we think the work that we’re doing is impactful, those digital health customers. That’s an example of something that might seem small and infinitesimal but is extremely powerful as it relates to improving not just healthcare overall but the experience of those individual patients.
Everyone has their own healthcare journey. It’s been fraught with potholes for many people for a long time. Interoperability has been around for a long time. Interoperability means many different things to many different people. But at the end of the day, it is data. It needs to be better connected. When it’s better connected, we will have better healthcare outcomes, and 1upHealth is a powerful force in helping to make those meaningful connections.
