Patient and practice characteristics related to patient’s consent for health data exchange

Abstract Background Sharing patient health data electronically between healthcare providers can prevent medical errors and improve patient safety. In the Netherlands, exchange of health information is facilitated on a national level and is only allowed with patient consent. Consequently, it is important to know which factors are related to this patient consent. Methods Routine electronic health records data from up to 10% of Dutch general practices (sourced from the Nivel Primary Care Database) were utilized, covering the period from 2016 to 2020. We examined whether patient consent for health data exchange varied depending on patient and practice characteristics, which are expected to have a relationship with granting consent for health data exchange. Therefore, multilevel analysis was performed. Results The percentage of patients granting consent ranged between 40%-50% in the period 2016 to 2019, while this was 97% in 2020, due to the governmental corona opt-in regulation. Significant disparities were observed across several of the included patient and practice characteristics in relation to patient consent for all the years examined. In most years, patient consent provision varied by gender, age, socioeconomic position, location, and healthcare use. Practice characteristics showed notable differences in patient consent across information systems, patient volumes, and practice types over all years examined. Conclusions We observed significant variations in patient consent for health data exchange, both among the included patient (need) and practice characteristics. These differences may stem from unequal exposure to opportunities to grant consent, differences in risk of inadequate communication between healthcare providers, levels of health literacy, and practice resources. These factors should be taken into account by policymakers when further implementing and upscaling the national health data exchange system. Key messages • Variations in patient consent for health data exchange were observed among different patient groups and general practices. • Variations in patient consent for health data exchange may stem from unequal exposure to opportunities to grant consent, levels of health literacy, and practice resources, among other factors.