Background: As the use of patient-owned devices, including smartphones and tablets, to manage day-to-day activities grows, so does healthcare industry's interest to better leverage technology to engage patients. For surgical care, a unique opportunity exists to capture patient-generated health data (PGHD) including photographs. As part of a broader initiative to evaluate PGHD for surgical site infection (SSI) surveillance, we sought evidence regarding patient involvement and experience with PGHD for SSI monitoring and surveillance. Methods: Through a scoping review of the literature and semi-structured stakeholder interviews we gathered evidence on what is currently known about patient perspectives of and experiences with mobile health (mHealth) interventions for post-operative recovery. We presented findings to and discussed with the ASSIST PGHD Stakeholder Advisory Group (PSAG) to generate priorities for further examination. Results: Our scoping review yielded 34 studies that addressed post-discharge use of PGHD for monitoring and surveillance of SSI. Of these, 16 studies addressed at least one outcome regarding patient experience; the most commonly measured outcome was patient satisfaction. Only three studies reported on patient involvement in the development of PGHD tools and interventions. We conducted interviews (n = 24) representing a range of stakeholder perspectives. Interviewees stressed the importance of patient involvement in tool and program design, noting patient involvement ensures the "work" that patients do in their daily lives to manage their health and healthcare is recognized. Discussion of evidence with the ASSIST PSAG resulted in formal recommendations for direct involvement of patients and caregivers for future work. Conclusions: While mHealth initiatives to advance post-operative management offer the ability to improve patient engagement, work is needed to ensure the patient voice is reflected. Active engagement with patients and caregivers in the development of new technology, the design of new workflows, and the conduct of research and evaluation ensures that the patient experiences and values are incorporated.
Keywords: mHealth; patient engagement; patient-centered care; patient-generated health data; surgical site infection.