Barriers and Enablers in Integrating Patient-Generated Health Data for Shared Decision-Making Between Healthcare Professionals and Patients: A Scoping Review (Preprint)

Abstract

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 utilization of patient-generated (health) data (PGHD) introduces complexities and challenges which warrant considering both health care professional and patient perspectives.

Summarize the relevant works in the past 10 years from the perspectives of the key stakeholders – healthcare professionals (HCPs) and patients (PATs) - on potential barriers and enablers to the integration of PGHD for shared decision-making. By looking at both perspectives, we are able to identify the key challenges and opportunities with PGHD throughout the patient’s journey.

Electronic searches were done 3 databases – PubMed, ACM Digital Library and IEEE. Enablers and barriers mentioned by the stakeholders in included papers were extracted. Thematic analysis was performed using a qualitative analysis software, MaxQDA. The six-stage workflow model initially proposed by West at al was used as a reference for deductive coding. Subsequently, considering barriers and enablers faced by both the HCPs and PATs uncovered various tensions and alignments of perspectives which could be addressed in future work and can inform concepts, designs and development in the area of PGHD for shared decision-making.

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 PATs beyond the clinical setting and could benefit system designers who plan to integrate DHTs involving PGHD for shared decision making.

This scoping review demonstrates that there are several factors to consider for effectively integrating PGHD in health-related shared decision-making. Notably, such factors extend outside the boundaries of traditional clinical settings. Although there is agreement between HCPs and PATs 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 PATs on effectively using PGHD for SDM.