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Bridging the gap between patient experience and research



Data Folia Health

Folia Health CEO reflects on her family’s experience with the healthcare system’s shortcomings and the need for a more personalised approach. 

Reflecting on the stories my mom shared about our medical experiences during childhood, it’s evident how a family’s journey with health challenges can shape one’s perspective.

Primary immunodeficiency (PID), a diagnosis my younger brother received as a toddler, propelled my mom into the realm of subject-matter expert in all things immunology. In her words, it wasn’t a choice but a necessity — a fundamental response when a child is battling illness.

My front-row seat to my parents’ struggle to access the right answers for my brother – despite the advantages of being professional advocates as attorneys themselves and well-insured – gave me a deep sense of frustration and eventually, a feeling of responsibility to commit my career to the problem of how we can reach the right answer for each patient faster, with less pain and more process, less guess-and-check and more science.

During my academic journey to reach a place where I could work on this problem, I again encountered a struggle for clarity – one that clinicians and researchers face in comprehending how treatments function across different patient groups, and how even to identify which patients should receive which therapies.

The promise of precise, data-driven medicine remained largely elusive due to gaps in accessible, comprehensive patient-level data. The seed for Folia Health was sown from a simple yet profound realisation: the individual, granular, baseline-and-response data I sought already existed, intricately documented in my mom’s journals and notepads.

These handwritten records held a wealth of untapped potential to enhance medical understanding and personalised treatments. My co-founder Daniel Toffling and I set out to create a structured, digital platform mirroring those painstakingly kept notebooks.

Our aim was to make it possible to collect ‘notebook insights’ on each person’s unique disease experience and response to therapy in the simplest, most structured and actionable way possible while maintaining the complexity of heterogeneous phenotypes that truly describe the needs of each individual patient.

During my time as a researcher, it became evident that there was a significant gap in utilising patient-generated data for more precise therapeutic outcomes. Traditional research methods often fall short when it comes to capturing the day-to-day nuances of living with a chronic or complex condition.

Clinical trials and episodic data collection at appointments only offer a limited view. They often lack the long-term, day-to-day insights necessary for a comprehensive understanding of the patient journey and experience.

Patients’ own observations are invaluable for identifying patterns, tracking disease progression, and understanding the real impact of treatments in the context of a patient’s daily life.

I believe in giving patients access to the proper tools needed to take control of their healthcare journey. I recognise that patients possess a unique intuition, honed through years of careful observation and learning, ultimately making them experts in their conditions. This hard-won knowledge, though powerful, often struggles to be effectively communicated during brief encounters in a clinical setting.

In our digital age, where healthcare dreams of a tech-enabled future, we sometimes overlook the essentials. While envisioning AI-driven diagnostics and personalised medicine, we must first ensure the basics are addressed. High-quality data is the foundation for advanced analytics, yet many of the traditional healthcare datasets are often incomplete, skewed, and insufficient to realise the potential of these cutting-edge technologies.

The key to unlocking all this is taking a highly individualized approach to data capture. Patients’ experiences are heterogeneous, so we need to treat collection as such. Flexibility, ensuring that patients are not constrained by pre-set tracking forms, allows for comprehensive and tailored data collection.

Researchers can then correlate this data with clinical findings, enriching their understanding of disease dynamics and aiding in the development of more effective treatments and interventions. This facilitates collaborative efforts and accelerates the pace of research by granting access to a broader range of information than what traditional research methods alone can provide.

In this pursuit, Folia Health has laid the groundwork, collaborating with communities of patients across over 500 conditions, to systematically collect and translate crucial daily observations of patients and caregivers. The hard-won knowledge of patients stands at the forefront of the healthcare revolution.

It has been phenomenal to see a shift towards a more inclusive, patient-centric model of healthcare, where patients are active participants, and their experiences and insights contribute significantly to research and treatment advancements.

By bridging the gap between individual patient experiences and research, we envision a future where data is not only structured but also deeply personal and impactful. Together, patients and researchers can redefine healthcare, turning lived experiences into valuable insights that drive precise and compassionate care.

Nell Meosky Luo is the Founder & CEO of Folia Health, a patient-driven health company where she has led a team to develop a novel method for enabling the collection and use of home-reported outcomes for precision care & research.

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