Designing tools and practices for patients and clinicians to make shared use of patient-generated health data.
People increasingly generate rich streams of health data outside of clinical visits — food diaries, symptom logs, blood pressure readings, activity records, medication adherence data — yet most consumer health apps are designed for personal use, not for sharing with a care team. The result is a persistent gap: patients who want to bring their data into clinical conversations often find that neither the tools nor the clinical workflow are ready for it, while clinicians who receive patient-generated data frequently lack the time, context, or interface support to use it well.
In a series of projects funded by the Agency for Healthcare Research and Quality (1R21HS023654), the Patient-Centered Outcomes Research Institute (PCORI), and the National Library of Medicine (1R01LM012810), my collaborators and I have studied this gap in depth — examining how patients and clinicians currently collaborate around personal data, co-designing tools to support that collaboration, and characterizing the conditions under which patient-generated health data can improve care. This work spans multiple conditions, populations, and clinical settings, with a particular focus on chronic conditions where ongoing self-monitoring is both clinically important and practically burdensome.
Before designing tools to improve data-sharing, we needed to understand current practices and why they so often break down. Working with patients managing irritable bowel syndrome (IBS) and overweight/obesity — two conditions where self-monitoring is frequently recommended — we found that even when patients brought detailed records to clinical visits, providers often did not use them in the way patients hoped or expected. Providers faced time constraints, lacked visualizations suited to clinical interpretation, and were uncertain how to act on data collected with consumer tools. The work showed that the problem was not patients' willingness to track, but the mismatch between what tracking tools produced and what clinical encounters could support.
In a broader systematic review, we synthesized evidence on how patient-generated health data and patient-reported outcomes affect the patient-clinician relationship across healthcare settings, surfacing consistent patterns — including changes to communication, trust, and clinical authority — that have implications for tool design.
In a project funded by PCORI, we examined the opportunities for patient-generated health data to transform healthcare more broadly, conducting interviews and surveys across a range of clinical settings and patient populations. This work documented the diversity of data types, clinical use cases, and implementation barriers, and produced a framework for characterizing the stakeholder perspectives that shape how PGHD is adopted.
A study of people managing IBS or weight using consumer apps and other tools to track food and symptoms drew on Charlotte Lee's concept of boundary negotiating artifacts — objects that people use to negotiate the boundaries of their respective expertise, autonomy, and responsibility — to analyze how personal informatics data functions in patient-provider relationships. Tracking data can operate as such an artifact: prompting renegotiation of who controls what, whose knowledge counts, and how clinical decisions get made. This framing positions patient-provider data sharing as a collaborative, socially negotiated process rather than a simple information transfer, with design implications for how tools surface and present data at the clinical boundary.
Understanding why data-sharing broke down pointed toward a design opportunity: rather than asking patients to bring raw tracking data into clinical visits and hoping providers could interpret it, tools could be designed to structure that data around the questions that clinical conversations are actually organized around. Two lines of design work built directly on the boundary negotiating artifacts insight.
FoodPrint addressed the problem of making patient-generated data useful in clinical conversations. Earlier work established the need: studies of food and symptom journals for IBS showed that even when patients brought detailed records to visits, providers and patients struggled to identify meaningful patterns together without better structure. FoodPrint built on this to design lightweight food diaries organized around the questions that actually matter in clinical conversations — enabling providers and patients to identify patterns, set individualized goals, and plan concrete changes together.
TummyTrials tackled a related problem: once a patient and provider suspect a trigger, how do you actually test it? Rather than asking patients and providers to sift through accumulated data hoping patterns would emerge (and not be horribly confounded by other factors), TummyTrials structured the collaboration around hypothesis testing — supporting patients in formulating specific hypotheses about food triggers and running brief personal experiments to produce results legible to both parties.
FoodPrint and TummyTrials each addressed specific clinical contexts. A broader synthesis examined what clinical use requires of personal health informatics tools in general. Through interviews with patients and clinicians across multiple conditions, this work identified translational needs — a set of recurring design requirements that arise specifically at the boundary between personal tracking and clinical use, and that most consumer tools systematically fail to address. The concept offers a design vocabulary for researchers and practitioners building tools intended to bridge personal and clinical data practice.
Most fitness tracking happens entirely outside the clinical loop — data that could inform care decisions sits in consumer apps that providers never see. The ExerciseRx program, developed in collaboration with The Sports Institute at UW Medicine and the UW Ubicomp Lab, is designed to close that gap. The platform integrates patient-facing mobile tracking with clinical dashboards embedded in the EHR and provider-patient messaging, so that exercise data collected at home becomes part of the clinical conversation rather than staying siloed on a patient's phone. Current deployments span multiple specialties — including oncology prehabilitation and rehabilitation, multiple sclerosis, and cerebral palsy — contexts where home-based exercise is clinically important but historically hard to monitor and support between visits.
A multi-year collaboration with Group Health / Kaiser Permanente Washington, funded by PCORI (BP-CHECK), examined how different blood pressure measurement methods — clinic, home, kiosk, and ambulatory monitoring — compare for diagnosing hypertension. This work combined randomized trial design with qualitative inquiry into patient and provider experiences, and surfaced important findings about how measurement context, workflow fit, and patient engagement shape both the accuracy of diagnosis and the quality of the care experience.
Collaborative uses of personal data can also reinforce or challenge existing power asymmetries — a concern that extends beyond individual clinical dyads. Our research on tracking in U.S. collegiate sports teams examined how institutional adoption of wearables and sensor data changes the power dynamics between athletes and coaches, raising questions about consent, data ownership, and the difference between data collected for an athlete versus about one.