Using Self-Study and Peer-to-Peer Support to Change “Sick” Care to “Health” Care: The Patient Perspective

Abstract

Background: Access to digital health technologies is contributing to a paradigm shift where sickcare may become authentic healthcare. Individuals can now access personal health data through wearable sensors, affordable lab screenings, genetic and genomic sequencing, and real-time health tracking apps. Personal health data access creates opportunities to study health indicators 24/7 and in real time. This is especially useful for patients with hard-to-diagnose or treat diseases, which led to a self-formed patient group called Project Apollo. Project Apollo is composed of highly motivated patients with common experiences of undiagnosed conditions, a lack of clear treatment options, and shared frustrations with navigating the U.S. healthcare system. These experiences have led the Apollo cohort to supplement their health knowledge through self-study research. Objective: To qualify the experience and expectations of patients affiliated with Project Apollo. Methods: A qualitative approach involved record review and semi-structured interviews. One-hour semi-structured interviews were conducted to solicit motivations, expectations, and potential barriers and facilitators to self-study followed by a brief survey on digital tool use. Interviews were digitally recorded, transcribed, and analyzed to identify themes and patterns. Results: Participants included six females and three males ranging in age from 30 to 70+ years. Responses were organized under five key themes including: frustration with healthcare system; community support; self-study/N-of-1 research; access to experts; moving from sick to healthcare. Facilitators include motivation, albeit stemming from frustration, a safe community where patients derive support, and access to experts for guidance. Increasing awareness of clinicians about the potential value of partnering with patients who are advancing health knowledge through self-study is critical. Conclusions: N-of-1 self-study research, coupled with community support and digital health tools, appears to be one plausible pathway to shifting the paradigm from sickcare toward patient-partnered healthcare.

The Challenges Toward Real-world Implementation of Digital Health Design Approaches: Narrative Review

“…In this regard, it hopes to provide a digital pathway to the triple aim in health care of improving patient experience, reducing costs, and improving health [ 17 ]. PCD seeks the patient to take leadership roles in their care, rather than being empowered by professionals [ 48 ], through qualitative patient perspective workshops that are interesting and enjoyable [ 47 ]. It pivots the UCD approach to user needs and wants, reframing them as patient needs centered on achieving therapeutic benefits and patient wants being intervention designs that guide retention [ 47 ].…”

“…Taking an example from the web 2.0 phenomena of prosumerist crowdsourcing, the approach understands that patients themselves are proactively taking the lead in curating their own health care through digital means, a health care 2.0 [ 40 ]. This approach resonates with the transition from “sick care” to health care, one where personalized health care is built around the patient’s self-tracking and self-analysis [ 48 ]. Preliminary research, ideation, and design all function within the discovery of patient-led initiatives to equip, enable, and empower patients [ 20 ].…”

“…Increasingly, DHTs will provide more tailored interventions that develop diverse data points around the patient’s feedback. The physician of tomorrow may increasingly be oneself [ 48 ], mediated by algorithmic deep learning. Ignoring this transition would be unwise.…”

Experiment in a Box (XB): An Interactive Technology Framework for Sustainable Health Practices

“…An alternative to outsourced health practices/health behavior change is emerging under the auspices of personal science (Wolf and De Groot, 2021) or "self-study" (Nebeker et al, 2020). This approach emphasizes what we call insourcing, meaning the cultivation of KSP within the person, thus establishing (and supporting) the person as the driver and lead for achieving desired states, not the technology.…”