Patient-Generated Health Data Elements: Developing a Data Model for Preference-Sensitive Conditions

Patient-generated health data (PGHD) refers to data generated by or from patients. Most often, PGHD is verbal and written, but today, it is increasingly digital. PGHD is considered crucial in shared decision-making (SDM), fostering patient empowerment and patients' active participation in health management. Studies have shown that SDM is especially valuable in preference-sensitive conditions such as multiple sclerosis (MS) and epilepsy. This study aimed to enhance the understanding of PGHD elements among people with epilepsy or MS (pwE/MS) by investigating PGHD currently shared and wished to be shared with healthcare professionals (HCPs). We found that pwE/MS consider numerous types of PGHD to be important in decision-making concerning the care. However, there are indications that pwE/MS are lacking the possibility to transmit data digitally. Development of digital health services could facilitate the integration of PGHD into care, but its meaningful use in SDM requires greater recognition and engagement by HCPs.