Heron

Before we jump into our first experiment, we want to set some context on the problems our work aims to address.

Self-management and self-advocacy are essential for achieving positive health outcomes, particularly for individuals with chronic conditions.

Today’s healthcare landscape presents unique challenges for those with chronic conditions. It can take months for an initial appointment with a specialist, requiring immediate self-management Self-management is the process by which someone manages their disease(s), symptoms, treatment, and lifestyle for their self-determined quality of life. and self-advocacy Self-advocacy is the process by which someone expresses their experiences, concerns, needs, desires, and decisions to healthcare professionals, to improve their healthcare outcomes. while going untreated during the critical initial months of a disease’s progression.

During medical appointments, patients must quickly communicate a wide range of information with their doctors, often relying on memory to recall experiences and express health goals and preferences gathered over a long span of time.

Health insurance providers make the final decision on which medications and procedures will be approved and how they will be administered, requiring continued self-advocacy for the prescribed treatments to avoid a lapse in care.

Reviewing outcomes and reacting to problems only at doctor visits would greatly limit the number of adaptive strategies Adaptive strategies are changes made to therapeutic interventions and lifestyle. that can be implemented and evaluated each year. Chronic conditions require regular at-home experimentation with adaptive strategies to find potentially compounding improvements. This self-management is critical for anyone navigating life with a chronic condition.

Because of these constraints, self-management and self-advocacy are essential for achieving positive health outcomes.

Individuals with chronic conditions have limited access to meaningful data needed to enable transformative self-management and self-advocacy.

To make well-informed decisions, individuals with chronic conditions need to know how their condition responds to variables in and outside of their control. But the data that tells this story is not meaningfully accessible, if it’s recorded at all.

Medical information, including bloodwork and laboratory results, x-rays, and doctor's notes, is tucked inside electronic health records which are often illegible and difficult to access. Records of movement, diet, and sleep routine can be found in health tracking apps, if used. Various notes of side effects, aches and pains, or confusing symptoms are written in journals or recorded in note taking apps.

Data collection can be cumbersome and tedious for the individual, adding to the burden of disease management. Existing data is disparate and disconnected, making it nearly impossible to recognize and understand connections to inform adaptive strategies.

Unable to access meaningful data, individuals are not well-supported in their efforts to self-manage and self-advocate.

Personal technology harbors the potential to support individuals in search of positive health outcomes with new methods of data collection and interpretation.

Today’s technology landscape presents the potential for a very different story for how individuals with chronic conditions leverage data related to their personal health.

We envision a future in which such an individual can easily collect all relevant data in one place, and flexibly arrange visualizations that help discern possible answers to the questions they care most about. These visualizations give individuals an opportunity to actually “see” the data instead of relying on hunches or holding information solely in their memories. They’re able to experiment with and refine their adaptive strategies quickly, forming many small iterative cycles, the benefits of which compound. They can follow along with the outcomes of changes to their prescriptions, and find correlations between possible triggers and their symptoms. They are able to make more informed decisions, and advocate to their healthcare providers with clear data. And, as people with chronic conditions often rely on one another, better outcomes for one mean better outcomes for their network.

Such a future is feasible with today’s technology. But what’s needed now are new constructs for data collection purpose-built to work well within the context of someone’s life while navigating a chronic condition, and interfaces that are able to flexibly represent diverse data and the associations within it to answer individuals’ questions.

A focus on individuals with chronic conditions maximizes the potential impact.

As elaborated above, individuals with chronic conditions experience the challenges with today’s personal health landscape with more difficulty.

These individuals know their conditions intimately, as they’re often lifelong and affect every day activities. They understand aspects of their conditions that their doctors don’t see, requiring clear communication to help guide their doctor’s support.

These individuals are already engaging in daily adaptive strategies, big and small. This existing behavior can be supported with data that helps people more concretely, and more quickly, confirm positive health outcomes from changes to their adaptive strategies, and iterate on ineffective adaptations.

Individuals with chronic conditions dedicate a considerable portion of their time to their health with some individuals allocating up to two hours each day on activities associated with personal healthcare including treatments, medical appointments, health insurance claims, lifestyle interventions, and beyond. Jowsey, T., Yen, L. & W, P.M. Time spent on health related activities associated with chronic illness: a scoping literature review. BMC Public Health 12, 1044 (2012). https://doi.org/10.1186/1471-2458-12-1044. Given the time and cost of the many interactions with doctors, insurance providers, and pharmacists, and the mental and physical toll of the therapeutic interventions employed, there is a lot of room for little improvements to have a significant impact over the course of one’s life.

Six in ten US adults are living with chronic conditions, and 90 percent of the $4.1 trillion in annual health care expenditures About chronic diseases (2022) Centers for Disease Control and Prevention. https://www.cdc.gov/chronicdisease/about/index.htm. are for those with chronic and mental health conditions. This problem is vast, and so is the opportunity.

We believe that with better methods of data collection and interpretation, individuals with chronic conditions will be able to make more informed decisions, engage tighter feedback loops for compounding improvements, and advocate for themselves to receive improved support from healthcare providers.

Published March 21, 2024