Why is a patient-first strategy mission-critical for digital health companies?
My passion for strategic patient-first care is built on decades of living with autoimmune disease and advocacy for the invisible autoimmune epidemic. Despite affecting as many people, autoimmune is 50 years behind cancer: under-recognized, under-researched, and with mostly underserved patients. Patients are not at the center of research, diagnostic or therapeutic development, or clinical care delivery. This post details how to create a mission-critical, patient-first strategy for digital health companies.
Through my involvement in patient communities and interviews (see Medx findings), I learned navigating the healthcare system feels like running a maze. Patients suffer from low primary-care awareness of autoimmune conditions and no care coordination. Long waits for specialists create unnecessary confusion and frustration among people who already struggle to manage chronic illnesses. Vulnerable patients like women and minorities are disadvantaged, lacking educational, financial, and emotional resources to navigate the complexities of the healthcare system.
My market research and patient interviews are summarized in “How to Achieve Your Optimal Wellbeing: A Patient Guide,“ which advises patients to find their personal power while living with chronic disease. I advise patients to:
- Get organized.
- Get educated.
- Get assertive.
- Experiment (with your clinical team).
With numerous diagnoses, most recently lupus in 2023, I follow this roadmap to be the “CEO of my own health.” I created my multidisciplinary medical team, including a rheumatologist, physical therapist, therapist, pilates and Gyrotonic teachers, and a sleep specialist. For most patients, however, creating a team that combines conventional and integrative (functional and lifestyle) methods is simply impossible. Until now. With the launch of rheumission, the startup I co-founded with a rheumatologist-patient, we aim to create and deliver long-term, integrative care plans for AIID patients.
What are the elements of a digital health patient-first strategy?
As the patient-clinician co-founder of rheumission, from day one, I have emphasized the importance of putting patients at the center. Our Patient-First Strategy is a specialized, three-pronged approach involving patient journey research, beta testing, and ongoing feedback from a Patient Advisory Council. Rheumission has been striving to employ this strategy for the best patient-centered environment as we move toward the official launch. However, executing this vision has been remarkably difficult.
Given my patient advocacy roots and the growing prominence of patient voices at conferences (e.g. HLTH and ViVE), I believed that I could kick-start our strategy by looking to other patient-first digital health start-ups. This was not the case; there was no template I could simply adapt to rheumission’s needs. Crafting a patient-first strategy for digital health takes expertise, time, and money. These are scarce resources in most startups that are needed for other essential activities. Starting from the bottom-up, I had to pioneer a strategy that integrates technology with a deep understanding of patient experiences, healthcare delivery, and regulatory requirements.
Who on the team can help get a digital health patient-first strategy implemented?
Of everything a startup needs to do, understanding patients’ physical, emotional, and practical needs should be a mission-critical item. To begin, I first mustered management support from our CEO, Dean Sawyer, who was willing to buy into this concept. I’m also gathering community support from like-minded patient advocates including Jen Horonjeff and Ronnie Sharpe of Savvy Coop. Savvy has been critical in working to understand the good, bad, and ugly of patient journeys, enabling our interview process. Working with them has been enlightening and invigorating. Then, our journey began with our first patient interviews.
How do we move forward?
Patient Interviews
We initially interviewed 15 patients to test our assumptions about our pilot target market. With each conversation, we better understood the individual issues that drove long, convoluted patient journeys. We particularly examined how the mental health needs of chronic disease patients are often overlooked or else used as an excuse for PCPs to ignore the underlying physical illness. The emotional turmoil when they receive (often long-delayed) chronic disease diagnoses sheds light on the need for better support. Despite ample evidence documenting the prevalence of anxiety and depression among autoimmune patients, few resources in the traditional system directly address patients’ emotional responses to diagnosis.
Our interactions also unveiled insights into patients’ attitudes toward self-care. Did they value themselves enough to prioritize their well-being? Many, particularly women, are people pleasers, where the needs of others (children, husband, parents) consistently overshadow their own. While there is plenty of research around motivational interviewing and stages of change, how can we use these findings to empower individual motivation toward self-care? My struggles with fibromyalgia and lupus reinforced the critical importance of self-care which allows me to function at my best each day. Thus, understanding diverse patient attitudes toward self-care in all stages of the health journey is crucial.
Insights to Strategy
Armed with these insights, we conceptualized and operationalized a beta-testing strategy, designed to incorporate comprehensive patient feedback into the entire care program. Our feedback questions extend beyond clinical and marketing inquiries to capture how patients think and feel about living with their chronic disease. Implementing this strategy is still a work in progress.
The third pillar in our strategy is our Patient Advisory Council (PAC), instrumental in getting ongoing patient feedback on rheumission’s care delivery and adherence to our mission. Though still in its infancy, our Patient-First Strategy is making real progress, thanks to the unwavering support of the CEO and the board for helping bring this idea to fruition.
As we continue to inch closer to our official launch, our next steps involve recruiting beta testers and PAC members aligned with our commitment to putting patients first. Stay tuned as we continue to redefine patient-centered care within the digital health landscape!
Authors: DrBonnie360, Ellen M. Martin, & Sydney Hahn
We approach these thought leadership posts from our multi-lens perspectives.
- DrBonnie360: Digital/virtual health consultant, clinical dentist, Wall Street analyst, patient & advocate.
- Ellen M. Martin: Consultant, editor, life science finance/IR/marcomm, autoimmune caretaker.
- Sydney Hahn: Digital health equity research intern, Human Biology and Society & Mathematical Biology Undergraduate Student at UCLA.
Strategic Consulting & Professional Services
We provide professional consulting services to investment, emerging, and established companies. Our work bridges silos and fills gaps to help our clients improve care for AIID patients and reduce costs. Informed by patient and caretaker perspectives, we urge investors & clients to integrate the best of digital, conventional, and functional medicine into AIID care delivery.
- We help our clients leverage digital innovations into V1C for AIID patients.
- Our subject matter expertise includes: oral health, microbiome, autoimmune patient journeys, competitive landscape analysis, strategic positioning & messaging, digital health, and self-hacking.
- We have decades of experience in finance, marketing, and communications for dozens of healthcare and life sciences organizations, emerging and established.
- Our backgrounds include clinical dentistry, osteology, biotech IR/PR, marcomm, content creation, strategic consulting, and autoimmune advocacy.
Contact us to help you map your market landscape and understand patients’ unmet needs. Also, we can help you clarify and articulate your company’s market position and differentiators. Long before COVID-19, we were facilitating virtual sessions. We also create compelling content: articles, blog posts, collateral, e-books, web copy, and white papers. Our Autoimmune Connect/DrBonnie360 website showcases our own content.
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