BackgroundPatient-generated health data (PGHD) are health-related data created or recorded by patients to inform their self-care and understanding about their own health. PGHD is different from other patient-reported outcome data because the collection of data is patient-driven, not practice- or research-driven. Technical applications for assisting patients to collect PGHD supports self-management activities such as healthy eating and exercise and can be important for preventing and managing disease. Technological innovations (eg, activity trackers) are making it more common for people to collect PGHD, but little is known about how PGHD might be used in outpatient clinics.ObjectiveThe objective of our study was to examine the experiences of health care professionals who use PGHD in outpatient clinics.MethodsWe conducted an evaluation of Project HealthDesign Round 2 to synthesize findings from 5 studies funded to test tools designed to help patients collect PGHD and share these data with members of their health care team. We conducted semistructured interviews with 13 Project HealthDesign study team members and 12 health care professionals that participated in these studies. We used an immersion-crystallization approach to analyze data. Our findings provide important information related to health care professionals’ attitudes toward and experiences with using PGHD in a clinical setting.ResultsHealth care professionals identified 3 main benefits of PGHD accessibility in clinical settings: (1) deeper insight into a patient’s condition; (2) more accurate patient information, particularly when of clinical relevance; and (3) insight into a patient’s health between clinic visits, enabling revision of care plans for improved health goal achievement, while avoiding unnecessary clinic visits. Study participants also identified 3 areas of consideration when implementing collection and use of PGHD data in clinics: (1) developing practice workflows and protocols related to PGHD collection and use; (2) data storage, accessibility at the point of care, and privacy concerns; and (3) ease of using PGHD data.ConclusionsPGHD provides value to both patients and health care professionals. However, more research is needed to understand the benefit of using PGHD in clinical care and to identify the strategies and clinic workflow needs for optimizing these tools.

Lack of health insurance negatively impacts children's health. Despite federal initiatives to expand children's coverage and accelerate state outreach efforts, millions of US children remain uninsured or experience frequent gaps in coverage. Most current efforts to enroll and retain eligible children in public insurance programs take place outside of the health care system. This study is a partnership between patients' families, medical informaticists, federally qualified health center (FQHC) staff, and researchers to build and test information technology tools to help FQHCs reach uninsured children and those at risk for losing coverage.

Practice-based research networks (PBRNs) are organizations that involve practicing clinicians in asking and answering clinically relevant research questions. This review explores the origins, characteristics, funding, and lessons learned through practice-based research in the United States. Primary care PBRNs emerged in the USA in the 1970s. Early studies explored the etiology of common problems encountered in primary care practices (eg, headache, miscarriage), demonstrating the gap between research conducted in controlled specialty settings and real-world practices. Over time, national initiatives and an evolving funding climate have shaped PBRN development, contributing to larger networks, a push for shared electronic health records, and the use of a broad range of research methodologies (eg, observational studies, pragmatic randomized controlled trials, continuous quality improvement, participatory methods). Today, there are over 160 active networks registered with the Agency for Healthcare Research and Quality’s PBRN Resource Center that engage primary care clinicians, pharmacists, dentists, and other health care professionals in research and quality-improvement initiatives. PBRNs provide an important laboratory for encouraging collaborative research partnerships between academicians and practices or communities to improve population health, conduct comparative effectiveness and patient-centered outcomes research, and study health policy reform. PBRNs continue to face critical challenges that include: (1) adapting to a changing landscape; (2) recruiting and retaining membership; (3) securing infrastructure support; (4) straddling two worlds (academia and community) and managing expectations; and (5) preparing for workforce transitions.

We conducted a meta-synthesis of five different studies that developed, tested, and implemented new technologies for the purpose of collecting Observations of Daily Living (ODL). From this synthesis, we developed a model to explain user motivation as it relates to ODL collection. We describe this model that includes six factors that motivate patients’ collection of ODL data: usability, illness experience, relevance of ODLs, information technology infrastructure, degree of burden, and emotional activation. We show how these factors can act as barriers or facilitators to the collection of ODL data and how interacting with care professionals and sharing ODL data may also influence ODL collection, health-related awareness, and behavior change. The model we developed and used to explain ODL collection can be helpful to researchers and designers who study and develop new, personal health technologies to empower people to improve their health.