Perceptions and willingness of patients and caregivers on the utilization of patient-generated health data: a cross-sectional survey

Abstract

Background: Patient-generated health data (PGHD) are increasingly recognized for their potential to complement traditional healthcare data by offering continuous monitoring and enhanced patient management. Despite the growing interest in PGHD however, the perceptions and willingness of patients and caregivers to utilize this information in a clinical setting remain underexplored. Objective: This study aimed to assess the perceptions, expectations, and concerns of patients and caregivers regarding the clinical utilization of PGHD. The influence of demographic factors such as age and health status on these perceptions was also explored. Methods: A cross-sectional survey was conducted of 400 participants, including both patients and caregivers. The survey collected data on attitudes towards PGHD, experiences with health information management, and the willingness to share PGHD for clinical and secondary purposes. Statistical analysis was used to identify significant differences in perceptions based on demographics and health-related roles. Results: The analysis revealed significant variations in attitudes towards PGHD that were based on the participants' health-related roles, age, and gender. Older patients and male caregivers exhibited higher concerns about data privacy and security, while younger participants showed greater enthusiasm for using PGHD in managing their health. These findings highlighted diverse needs and expectations across different demographic groups. Conclusion: Consideration of demographics and role-based differences is very important when designing and implementing PGHD systems. Tailored approaches that address specific concerns and expectations can enhance the acceptance and effectiveness of PGHD in clinical practice, ultimately fostering more patient-centered care.