Consumerism in Healthcare: An Unstoppable Evolution

Irrespective and/or in spite of any government landscape, the healthcare future is bright.  We are on the precipice of a new autonomous behavior paradigm delivering unprecedented advancement no longer reliant on a healthcare system constrained by its own needs...

Rare Disease Week on Capitol Hill 2025, ©EveryLife Foundation

The transition to a new administration is raising serious concerns about the direction of healthcare policy and funding. (In February I myself experienced two disruptions of HHS initiatives I was involved with: cancellation of an ARPA-H event in San Francisco in January, and cancellation of the February 27-28 NIH-FDA Rare Disease Day in Washington.) The plethora of change from the new administration cannot slow the impending consumer involvement paradigm.  However, it can help expedite our inevitable future.     

Disease and mortality are universal, not political—they don’t discriminate based on wealth, race, or political affiliation.   The rising era of consumer-driven healthcare is on a fundamental trajectory of evolution beyond political influence that will make astronomical medical advancements possible.  Susannah Fox Famously rights about participatory patients and caregivers in her book, Rebel Health. There are exponentially growing examples of citizen scientists like Courtney Morales Hofmann looking to GPT to find a diagnosis for her son after 3 years and 17 different providers, and a recent NYT article of mother turning to Facebook Groups in the wake of her child's rare disease diagnosis.

The Inevitable Future of Consumer-Driven Healthcare

I have first-hand knowledge of consumerism behavior, having two young sons with separate severe, chronic, congenital, genetic, rare, and undiagnosed diseases. I know the importance of consumer-driven participation, data aggregation, research and advocacy. Each rare disease is a tiny market, of little commercial interest to the business of healthcare, but rare patients and caregivers are the epitome of deeply involved, engaged healthcare consumerism. Knowledge is power, and that includes consumer data.

My personal caregiver journey and career as a digital designer and developer has shown me a future where rare disease consumers are empowered with consumer-driven tools (such as 21st Cures Act and FHIR®) to directly contribute to their outcomes and the overall understanding of their disease. Equally important to empowering consumer autonomy is the introduction of artificial intelligent large language models (LLMs), such as GPT, Claude, Llama, and Gemini, which provide patients and caregivers with 24/7 on-demand access to query medical expertise (cite e-Patient Dave's #PatientsUseAI)

Consumerism + Technology and Policy Tools = Patient Autonomy

This is unexpected to some in healthcare: As consumers play more active roles, their strong motivation—despite lacking formal medical training—will become increasingly valued by providers. 

This shift is driven by two primary factors:

1. Consumers Have Fully Aligned Intentions and Ample Time – Unlike institutional stakeholders constrained by bureaucracy and business plans, patients and caregivers have a direct, vested interest in outcomes and advancements right now.  Rare disease consumers know there’s nothing more important on this planet than their health.

2. Citizen Science:

   • The Quantified Self Movement for 20 years has been leveraging personal data and open-source research to explore the interconnectivity of physiology.  Mobile, wearable devices (like CGMs [continuous glucose monitors]), behavior, symptomatic and genome sequencing data allow individuals to optimize their own biology.

   • Severe Chronic Congenital Genetic Rare Disease Communities, despite the absence of significant funding or expertise, are spearheading the consumer behavior trend, influence and benefits of public policy and pushing the boundaries of technology to leverage data.
     

Consumerism and the Future of Health Policy

HHS Secretary Robert F. Kennedy Jr., has a strong focus on health transparency, involvement, and respect for individual rights — particularly relevant to rare diseases.

• He has a passion for chronic disease betterment that emphasizes self-monitoring and data-driven intervention.

• Rare disease communities are christened to pioneer consumer-driven healthcare, with patient advocacy groups leading the push for diagnostic, treatment and biological advancement effectiveness.

• This sets the stage for integration of consumerism, policy, technology, and AI to define the next stage of medical progress.
  

The Irreversible Trajectory of Consumerism in Healthcare

No administration can alter this course—the only variable is the speed of adoption. While legacy business interests may resist or ignore us, they cannot prevent the evolution of consumer behavior.

1. Data Aggregation and the Legal Right to Access

   • The technology infrastructure now supports consumer access to health data, legally reinforced by 21st Century Cures and FHIR API standards.

   • Integration of non-clinical, wearable, and patient contributed data (PCD) is redefining precision medicine and translational science 

   • Much remains to be “built” in this new world of data flows, but the enabling pieces exist.

2. The Spectrum of Biological Understanding

   • From basic knowledge (e.g. germ theory) to the pursuit of a medical future (e.g. stem cells), our understanding is impressive.  However, we are far from completion, and The $4.7 trillion U.S. healthcare industry is too often operating on obsolete knowledge (half of medical facts become outdated within decades [Poynard et al., 2002]).  

   • Not stifled by the status quo: consumer-driven behavior, access to information and data collection will transform healthcare in unprecedented ways.   Advancements in one domain, accelerate knowledge across all.

   • AI algorithms will help process vast datasets to identify patterns that enhance diagnostic accuracy, treatment personalization, and disease progression modeling (Topol, 2019).

Rest Easy…  The Future is Bright.

The evolutionary trajectory is inevitable—only the rate of change remains unknown. We stand ready to work with the Kennedy team at HHS to expedite this inevitability.  Our ability to produce results can be amplified if policy enables us with data aggregation “rules and tools” and especially if each of our communities has the technological power of new-era generative AI and deep learning tools. We expect this administration will help us help ourselves, so we rely no longer on a system constrained by its own needs.