We explored how healthcare professionals (HCPs) perceive and utilize patient-generated health data (PGHD) from mobile health (mHealth) solutions in managing multiple sclerosis (MS). Through interviews and participatory workshops, we found that HCPs valued subjective data, such as patient habits, lifestyles, and fatigue-inducing activities, but faced challenges in making this data actionable. These findings highlight the potential of mHealth in fostering participatory care while underlining the need for better data visualization and integration into clinical workflows.
What was the context of our study?
Multiple sclerosis (MS) is a complex condition that affects mobility, cognition, and quality of life. Self-management tools, including mHealth apps, can empower individuals with MS by helping them monitor their symptoms and engage in shared decision-making with healthcare providers. While patient-generated data has the potential to enhance care, its integration into clinical workflows remains underexplored, particularly from the perspective of HCPs.
What did we do?
We employed a mixed-methods approach involving 16 healthcare professionals from Spain and Switzerland, specializing in MS care. The study had three phases: data collection through semi-structured interviews, participatory workshops to evaluate the utility of different types of PGHD, and the design of visualization prototypes for actionable use. This iterative process aimed to identify the types of PGHD that are most valuable to HCPs and explore how they can be effectively integrated into clinical practice.
What did we find?
HCPs expressed optimism about the potential of mHealth and PGHD to support MS care. They identified subjective data, including habits, lifestyle, and fatigue-inducing activities, as the most useful for understanding patients’ needs. However, these types of data posed challenges in terms of visualization and clinical actionability. While objective data, such as sleep quality and physical activity, was easier to interpret, it was seen as less reflective of individual patient experiences. Additionally, only a small fraction of HCPs reported having previously used PGHD in their practice, highlighting a gap in adoption and familiarity.
Why is this important?
The integration of PGHD into MS care offers an opportunity to tailor interventions, improve patient-provider communication, and enhance participatory care. However, realizing this potential requires addressing challenges related to data validity, usability, and workflow integration. By focusing on subjective data and designing better visualization tools, mHealth solutions can align more closely with the needs of both patients and healthcare professionals.
Reference
Guardado S, Mylonopoulou V, Rivera-Romero O, et al. An Exploratory Study on the Utility of Patient-Generated Health Data as a Tool for Health Care Professionals in Multiple Sclerosis Care. Methods Inf Med. 2023;62(5–6):165–173. https://www.thieme-connect.de/products/ejournals/abstract/10.1055/s-0043-1775718