Personal Health Record for Personalizing Research and Care Trajectories: A Proof of Concept Pilot with Diet in Inflammatory Bowel Diseases

Abstract

Combinations of health-related research data and clinical data generated, e.g., from wearables, can increasingly provide new insights about a person's health. Combining these data in a personal health record (PHR), which is managed by citizens themselves, can enhance research and enable both personalized care and prevention. We piloted a hybrid PHR using it for scientific research and the concomitant return of individual findings for clinical information and prevention purposes. The obtained information on the quality of daily dietary intake allowed researchers to further investigate the association between diet and inflammatory bowel diseases (IBDs). Additionally, the feedback enabled participants to adjust their food intake to improve the quality and prevent nutritional deficiency, thereby increasing their health. Our results showed that a PHR including a Research Connection can be successfully used for both purposes but requires a good embedding in both research and healthcare processes with the cooperation of healthcare professionals and researchers. Addressing these challenges is key in the pursuit of delivering personalized medicine and building learning health systems with PHRs.

Keywords: personal health record; personalized medicine; precision medicine; prevention; research participation; return of findings.