Patient Perspectives on Secondary Use of Health Data for Diabetes Care: Acceptability and Equity Concerns

Background : Population health interventions are essential tools for improving diabetes care delivery and often involve secondary use (i.e., not for direct patient care) of patient health information. Examples include tracking patients in disease registries, applying predictive models for risk stratification, and identifying selected patients for targeted interventions. Patient acceptability is key to the successful and ethical implementation of these interventions but remains understudied, particularly among marginalized groups. Objective : This study explored patients’ perspectives on health systems’ secondary use of individual patient data for population health interventions. Design : Semi-structured qualitative interview study containing vignettes, conducted in person and over the phone. Participants : Twenty Spanish—or English-speaking patients with diabetes who receive primary care from federally qualified health centers in San Francisco, California. Approach : This study employed an acceptability theoretical framework that encompassed attitudes, ethical considerations, perceived effectiveness, and anticipated burden. It examined participants’ perspectives on population health interventions, including disease registries, predictive risk models, and proactive e-consults. Key Results : Twenty patients participated in an interview (15 in English, 5 in Spanish; Gender: 10 M, 10 F; Age: 61,7 avg, std=11.1; self-identified ethnicity: 30% Latinx, 35% African American, 10% White, 20% Other). While participants generally viewed population health interventions as valuable and acceptable, they expressed concerns regarding their implementation. These included mixed opinions on incorporating ethnicity into risk prediction tools, privacy risks such as data breaches, and fears of law enforcement misuse. Participants proposed strategies to mitigate risks, including clearer risk communication with providers, improved consent practices, and ethical data sharing. Notably, responses varied across participants’ self-identified ethnic backgrounds. Conclusions : Enhancing consent processes, strengthening data protections, sharing anonymized trends with patients, and tailoring risk communication to diverse social contexts were identified as strategies to improve the acceptability of population health interventions for diabetes care delivery for marginalized groups.