Scoping Review on Barriers and Enablers in Integrating Patient-Generated Health Data for Shared Decision-Making (Preprint)

BACKGROUND Advancements in technologies and increased adoption of wearables and smartphones by individuals have led to an abundance of patient-generated healthcare data. These data, when used effectively, could help to further augment the process of shared decision-making to enable patient-centred care. However, the possible integration and utilization of patient-generated health data (PGHD) introduce complexities and challenges which warrant considering both health care professional and patient perspectives. OBJECTIVE Summarize the relevant works in the past 10 years from the perspectives of the key stakeholders – healthcare professionals (HCPs) and patients - on potential barriers and enablers to the integration of PGHD for shared decision-making. We analyzed both perspectives to surface key challenges and opportunities with integrating PGHD throughout a patient’s journey and HCP’s clinical workflow. METHODS Electronic searches were done 3 databases: PubMed, ACM Digital Library and IEEE. Enablers and barriers mentioned by the stakeholders in included papers were extracted and analyzed using thematic analysis. The existing six-stage workflow model for integrating patient generated health data 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 shared decision-making. RESULTS Fifty-three 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 six-stage workflow was further expanded based on the new findings.to include four additional stages which include contextual considerations outside of traditional clinical environments. In addition to partially corroborating previously established barriers in the six-stage workflow model, several new barriers and enablers were identified throughout all stages. This model helps to further align needs of HCPs and patients beyond the clinical setting and could benefit system designers who plan to integrate PGHD for shared decision making. CONCLUSIONS 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 findings suggest that apart from lifting the barriers to the integration of PGHD, there can be a role for digital health technologies in mediating alignment between HCPs and patients on effectively using PGHD for SDM.