Background: Patient perspectives on quality of care are often collected by assessing patient satisfaction with care, yet this does not encompass patient function, well-being or health-related quality of life – important domains that drive individuals to seek care. This gap in understanding patient experience is driving new approaches beyond patient-reported outcome measures for capturing data directly from patients, such as wearable devices, mobile health apps and geolocation technology. While the surge of technology-driven solutions creates an opportunity for new insights into health, many questions remain for stakeholders about the ability of this data to transform care.
Proposed Solution: We will create a community of stakeholders to identify evidence gaps in determining the value of patient-generated health data (PGHD). Answering questions about how PGHD informs patient care, value stakeholders place on PGHD, information needed to support decision-making to recommend or adopt PGHD and challenges stakeholders face when interpreting PGHD will shape the research agenda necessary to inform use of PGHD technologies to improve patient care.
Objectives: This project will create a sustainable foundation for PCOR inclusive of PGHD that is responsive to the needs of stakeholders. Specific aims include: 1) identifying case studies of PGHD in practice, illustrating the range of applications in healthcare; 2) creating a framework to guide research development and implementation; and 3) developing a research agenda on the most pressing and impactful areas to advance evidence on the integration of PGHD to improve patient-centered care.
Activities: We will work with PGHD experts to identify real world case studies. Case studies will highlight diversity of PGHD use and will inform discussions with stakeholders on the value of PGHD and existing evidence gaps on the effectiveness of PGHD to advance patient-centered care. We will create a framework of important constructs for designing research inclusive of PGHD as well as areas for future research. Through multi-stakeholder workshops, we will obtain feedback on the research framework and prioritize the most pressing and impactful areas of research to move forward.
Outcomes: The proposed project will create a community focused on developing and translating PGHD research into practice. This is an important outcome as it bridges the existing divide between those who develop technology and those who use technology for the advancement of health. Creating a framework for PCOR inclusive of PGHD will help ensure future research addresses important study design considerations and be responsive to needs of stakeholders. Finally, engagement with diverse stakeholders to identify a research agenda will create an actionable plan for addressing important questions for integrating PGHD in the context of healthcare system transformation.
Engagement: This project combines engagement with PGHD experts and healthcare stakeholders to understand the current environment of PGHD utilization and existing evidence gaps. The UW Medicine Digital Health Advisory Committee will guide our work and assist us in engaging clinical and research stakeholders across UW Medicine, and we will partner with the CERTAIN Patient Advisory Network to engage the patient and caregiver perspectives.
Collaborators: UW Medicine Accountable Care Network, UW Medicine Digital Health Advisory Committee, CERTAIN Patient Advisory Network