Barriers and Enablers to Integrating Patient-Generated Health Data in Shared Decision-Making From Health Care...

Advances in sensor technologies and increased adoption of wearables and smartphones by individuals have led to an abundance of patient-generated health data (PGHD). This data, when used effectively, could help to further augment the process of shared decision-making (SDM) to enable patient-centered care. However, the possible integration and usage of PGHD introduces complexities and challenges, which warrant considering both health care professional (HCP) and patient perspectives.

Summarize the relevant works from the past 10 years that reflect the perspectives of both HCPs and patients as key stakeholders on potential barriers and enablers to the integration of PGHD for SDM. We analyzed both perspectives to surface key challenges and opportunities with integrating PGHD throughout patient journeys, as well as clinical workflows.

Electronic searches were done using 3 databases: PubMed, ACM Digital Library, and IEEE Xplore for papers published between March 2013 and March 2023. Enablers and barriers mentioned by the stakeholders in included papers were extracted and analyzed using thematic analysis. An existing six-stage workflow model for integrating PGHD was used as a reference for deductive coding. Subsequently, considering barriers and enablers faced by both the HCPs and patients uncovered various tensions and alignments of perspectives, which could be addressed in future work and can inform concepts, designs, and development in PGHD for SDM.

A total of 53 publications were included in the scoping review. Six main overarching themes for barriers and enablers were identified: (1) patient-provider relationship, (2) patient characteristics, (3) organizational factors, (4) medical ethics and law, (5) data-driven workflow, and (6) design and technology. The 6-stage workflow was further expanded based on the new findings to include 4 additional stages, which include contextual considerations outside of traditional clinical environments. In addition to partially corroborating previously established barriers in the 6-stage workflow model, several new barriers and enablers were identified throughout all stages. This model helps to further align the needs of HCPs and patients beyond the clinical setting and could benefit system designers who plan to integrate PGHD for SDM.

This scoping review demonstrates that there are several factors to consider for effectively integrating PGHD into health-related SDM. Notably, such factors extend outside the boundaries of traditional clinical settings. Although there is agreement between HCPs and patients on certain factors, there are also tensions to be addressed. Our augmented 10-stage workflow model offers system designers an overview of the challenges and enablers to consider while designing for PGHD integration in clinical workflows and patient journeys to improve SDM.