No abstract

Background: As the use of patient-owned devices, including smartphones and tablets, to manage day-today 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.

Objective The growing prevalence of chronic conditions requiring changes in lifestyle and at-home self-management has increased interest in and need for supplementing clinic visits with data generated by patients outside the clinic. Patient-generated health data (PGHD) support the ability to diagnose and manage chronic conditions, to improve health outcomes, and have the potential to facilitate more “connected health” between patients and their care teams; however, health systems have been slow to adopt PGHD use in clinical care. Materials and Methods We surveyed current and potential users of PGHD to catalog how PGHD is integrated into clinical care at an academic health center. The survey included questions about data type, method of collection, and clinical uses of PGHD. Current users were asked to provide detailed case studies of PGHD use in research and care delivery. Results Thirty-one respondents completed the survey. Seventeen individuals contributed detailed case studies of PGHD use across diverse areas of care, including behavioral health, metabolic and gastrointestinal conditions, musculoskeletal/progressive functional conditions, cognitive symptoms, and pain management. Sensor devices and mobile technologies were the most commonly reported platforms for collection. Clinicians and researchers involved in PGHD use cited the potential for PGHD to enhance care delivery and outcomes, but also indicated substantial barriers to more widespread PGHD adoption across healthcare systems. Conclusion The results of our survey illustrate how PGHD is used in targeted areas of one healthcare system and provide meaningful insights that can guide health systems in supporting the widespread use of PGHD in care delivery.

Background Patient‐centered approaches to research design are particularly important for diseases with complex treatment decision‐making, such as recurrent, high‐grade non–muscle‐invasive bladder cancer (NMIBC). The objective of this article is to describe patient and public involvement (PPI) in designing a large, pragmatic observational trial and to articulate barriers, challenges, and lessons learned for future design. Methods Through multistakeholder involvement, a large, pragmatic observational trial was designed to investigate the outcomes of high‐risk, recurrent NMIBC, and it was titled Comparison of Intravesical Therapy and Surgery as Treatment Options for Bladder Cancer (CISTO). CISTO's design used the Guidance for Reporting Involvement of Patients and the Public 2 reporting checklist for PPI and built on prior engagement infrastructure in partnership with the Bladder Cancer Advocacy Network. Results CISTO's PPI began with research prioritization to identify the highest priority questions facing patients with NMIBC. A pragmatic observational study design was selected and refined through stakeholder input. PPI included patients and caregivers organized into an advocate advisory board and clinicians, researchers, payers, and industry representatives organized into an external advisory board. An engagement plan was created to define the stages of PPI and the level and nature of the involvement of each group. PPI was measured quantitatively and qualitatively through evaluation surveys and iterative feedback from board members, with changes made for continuous improvement. Conclusions Through intentional PPI, CISTO aims to produce pragmatic and generalizable results that will allow patients to make informed decisions for recurrent, high‐risk NMIBC based on their personal experiences. Lay Summary Involving patients and other stakeholders in research ensures that it reflects the outcomes that matter most to them. This is especially important when research focuses on conditions in which patients face difficult decisions about treatment options. This article describes the key role that stakeholders played in shaping the Comparison of Intravesical Therapy and Surgery as Treatment Options for Bladder Cancer (CISTO) study. It compares treatments for recurrent noninvasive bladder cancer and describes how stakeholders were engaged to design and develop the study and the practices that supported their involvement.

No abstract