In the dynamic landscape of digital therapeutics, where technology converges with healthcare to revolutionize patient outcomes, the Digital Therapeutics Alliance (DTA) stands at the forefront as a pioneering force. At the heart of its commitment to patient-centricity and the seamless integration of digital interventions into healthcare protocols is the invaluable contribution of its Patient Advisory Council. This esteemed council, convened in partnership with SAVVY Coop, serves as a cornerstone in shaping the alliance’s strategies, with insights and experiences that guide the alliance to navigate the complex intersection of technology and healthcare while improving patient well-being.
Embarking on a journey through the complexities of chronic illness and healthcare, our patient advisor shares a unique narrative that intertwines personal resilience with the transformative power of digital therapeutics (DTx).
Interview
Can you walk us through your patient journey?
Patient advisor: I was born with a genetic systemic and degenerative disorder, as well as a neurodevelopmental disorder, and in my early adolescence I developed my first autoimmune disease. My symptoms were life-altering but manageable with traditional adaptations or “quick hacks” at their mildest and totally debilitating to where extreme accommodations were necessary in other cases.
I was a vigorously devoted student, so I came out of K-12 intentionally prepared to have a storied academic and practical career, but I also had to double-duty becoming a “professional patient” and continuing my own crash course hands-on medical education with more-than-casual proficiency in:
I’ve since had to radically re-orient my perspective and my “life/career balance” to where I’m not leading so much a double life as I am a full-time career professional patient who moonlights as a gig worker in being “normal.”
How have digital therapeutics fit into that journey and how would you describe the impact of DTx on your health and wellbeing?
Patient advisor: I grew up in the 90s and early 2000s, and, as an islander, things were relatively rural. My family did have internet access, and my district was an early adopter of virtual school, but most of my medical needs had to be met in-person and required taking long trips to the mainland or working with local onsite therapists. Countless hours on the phone, endless faxes and snail mail correspondences, days (and weeks!) out of school, whole class periods and nap times were rescheduled to account for tutors, therapists, doctors, nurses, case workers, insurance adjusters, medicaid adjudicators—-all just to access and then still maintain my basic health needs!
When I moved to the mainland for college, my health regimen was completely uprooted and started from scratch. There was no transition. My health coverage stopped, my childhood resources were cut off and had no adult equivalent. Adult care and independent living resources for people with my diagnoses was (in some ways still is!) the wild west. But when starting from a completely clean slate, I was open to pretty much *everything*.
The initial part of my adult patient experience in the early 2010s was very much me trying to retrace my parents’ steps (with the adult equivalents). Time was definitely less of an issue, as was distance, because I had so much of my health history on paper and had freedom of choice to pick my coverage and my care providers. As my care plan became more complex and the “milestones” in my health journey changed, digitalization and virtualization was also exceeding pace. I started to be referred to trial cutting-edge therapies, such as biofeedback in pelvic floor therapy. These experiences illustrated to me exactly how much control I had in my therapeutic process and directly influenced the next-steps goals of my continuing PTT curriculum. In the late 2010s, when I was evaluated for my replacement wheelchair, I was initially evaluated with the goal to transition from a manual chair to a powerchair, but my physical therapist–understanding that my everyday lifestyle still greatly benefit from the flexibility of a standard manual wheelchair–found me to be an excellent candidate for a manual chair with a separate (and lightweight!) power-assist that is controlled by a proprietary app and wristband.
However, it’s what happened in the aftermath of COVID lockdown restrictions in the 2020s that absolutely made me appreciate the dynamic nature of digital therapeutics and made me realize how very different my adult patient life is from my childhood experience. In so many ways, I was re-living some of those challenges from my childhood, most notably being back to physical isolation from my care providers—only this time due to capacity restrictions, social distancing, and risk of exposure on public transit (I don’t drive, and like many other patients, I am immunocompromised). Where in the past my parents may have been faced with the choice of forgoing treatment, taking an inconvenient (and far away) appointment, an extended pre-planned hospital admission, or scheduled in-school therapies, I now had the option to follow my own physical therapy regimen via a phone app (or a web portal!) on my own personal device.
The monitoring for my cardiac study was similar with a phone delivered to my home with the proprietary app and software pre-installed. In both cases, the initial “hardware” was administered to me by my providers—so not 100% digital or remote, but significantly expedited. A one-time appointment for acquiring tools without having to schedule follow-ups is doable.
The nature of my health is degenerative, but the future of DTx is emerging. Things are getting “worse,” but things are also getting so, so much better. The result is… normal! I feel like I am able to, at least part of the time, feel “normal,” a sense of neutrality. I’m very hyper-conscious of my health and way more hands-on than I was as a child, but digital therapeutics and advancements in digital-assisted medical technologies has given me back so much of the time and the autonomy that my parents and I did not have when I was young.
What do you think patients need in terms of education so that they can adopt DTx solutions into their own care plan?
Patient advisor: When I first moved out of my parents’ home and to the mainland, things got a lot harder before they got “easier”. My parents did an excellent job of caring for my needs, but not with preparing me to be my own patient advocate. All of the opportunities I’ve had as an adult have come to me by being in the “right place at the right time”. I’ve been fortunate enough to be referred to these more-than-modern solutions.
Unfortunately, the average patient might not be a patient at all–they may be a consumer, and their only access to health “care” may be through predatory wellness trends via social media. This was also some of my earliest exposure to digital aids (or what I thought were digital aids). Had it not been for my care providers introducing me to actual assistive technologies, and for me being able to verify these tools actually existed and saw success in my patient communities (particularly the wheelchair power assist), I don’t think I would have become nearly as passionate on how powerful and meaningful they’ve been to my quality of life.
Digital therapeutics, as a whole, need a strong public service outreach and visibility campaign on mainstream platforms and in patient-oriented support spaces in the form of direct ambassadors, information campaigns, access to trials, and patient success stories.
Check back in January to hear more from our patient advisor. Part 2 of this interview will focus on what DTA can do to promote awareness among patients, clinicians, and payors.