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263 result(s) for "Patient Generated Health Data"
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Electronic Patient-Generated Health Data to Facilitate Disease Prevention and Health Promotion: Scoping Review
Digital innovations continue to shape health and health care. As technology socially integrates into daily living, the lives of health care consumers are transformed into a key source of health information, commonly referred to as patient-generated health data (PGHD). With chronic disease prevalence signaling the need for a refocus on primary prevention, electronic PGHD might be essential in strengthening proactive and person-centered health care. This study aimed to review and synthesize the existing literature on the utilization and implications of electronic PGHD for primary disease prevention and health promotion purposes. Guided by a well-accepted methodological framework for scoping studies, we screened MEDLINE, CINAHL, PsycINFO, Scopus, Web of Science, EMBASE, and IEEE Digital Library. We hand-searched 5 electronic journals and 4 gray literature sources, additionally conducted Web searches, reviewed relevant Web pages, manually screened reference lists, and consulted authors. Screening was based on predefined eligibility criteria. Data extraction and synthesis were guided by an adapted PGHD-flow framework. Beyond initial quantitative synthesis, we reported narratively, following an iterative thematic approach. Raw data were coded, thematically clustered, and mapped, allowing for the identification of patterns. Of 183 eligible studies, targeting knowledge and self-awareness, behavior change, healthy environments, and remote monitoring, most literature (125/183, 68.3%) addressed weight reduction, either through physical activity or nutrition, applying a range of electronic tools from socially integrated to full medical devices. Participants generated their data actively (100/183, 54.6%), in combination with passive sensor-based trackers (63/183, 34.4%) or entirely passively (20/183, 10.9%). The proportions of active and passive data generation varied strongly across prevention areas. Most studies (172/183, 93.9%) combined electronic PGHD with reflective, process guiding, motivational and educational elements, highlighting the role of PGHD in multicomponent digital prevention approaches. Most of these interventions (110/183, 60.1%) were fully automatized, underlining broader trends toward low-resource and efficiency-driven care. Only a fraction (47/183, 25.6%) of studies provided indications on the impact of PGHD on prevention-relevant outcomes, suggesting overall positive trends, especially on vitals (eg, blood pressure) and body composition measures (eg, body mass index). In contrast, the impact of PGHD on health equity remained largely unexplored. Finally, our analysis identified a list of barriers and facilitators clustered around data collection and use, technical and design considerations, ethics, user characteristics, and intervention context and content, aiming to guide future PGHD research. The large, heterogeneous volume of the PGHD literature underlines the topic's emerging nature. Utilizing electronic PGHD to prevent diseases and promote health is a complex matter owing to mostly being integrated within automatized and multicomponent interventions. This underlines trends toward stronger digitalization and weaker provider involvement. A PGHD use that is sensitive to identified barriers, facilitators, consumer roles, and equity considerations is needed to ensure effectiveness.
Application of Patient-Generated Health Data Among Older Adults With Cancer: Scoping Review
The advancement of information and communication technologies has spurred a growing interest in and increased applications of patient-generated health data (PGHD). In particular, PGHD may be promising for older adults with cancer who have increased survival rates and experience a variety of symptoms. This scoping review aimed to identify the characteristics of research on PGHD as applied to older adults with cancer and to assess the current use of PGHD. Guided by Arksey and O'Malley as well as the JBI (Joanna Briggs Institute) methodology for scoping reviews, 6 electronic databases were searched: PubMed, Embase, CINAHL, Cochrane Library, Scopus, and Web of Science. In addition, the reference lists of the selected studies were screened to identify gray literature. The researchers independently screened the literature according to the predefined eligibility criteria. Data from the selected studies were extracted, capturing study, participant, and PGHD characteristics. Of the 1090 identified studies, 88 were selected. The publication trend gradually increased, with a majority of studies published since 2017 (69/88, 78%). Almost half of the studies were conducted in North America (38/88, 43%), followed by Europe (30/88, 34%). The most common setting in which the studies were conducted was the participant's home (69/88, 78%). The treatment status varied; the median sample size was 50 (IQR 33.8-84.0). The devices that were used to measure the PGHD were classified as research-grade wearable devices (57/113, 50.4%), consumer-grade wearable devices (28/113, 24.8%), or smartphones or tablet PCs for mobile apps (23/113, 20.4%). More than half of the studies measured physical activity (69/123, 56.1%), followed by patient-reported outcomes (23/123, 18.7%), vital signs (13/123, 10.6%), and sleep (12/123, 9.8%). The PGHD were mainly collected passively (63/88, 72%), and active collection methods were used from 2015 onward (20/88, 23%). In this review, the stages of PGHD use were classified as follows: (1) identification, monitoring, review, and analysis (88/88, 100%); (2) feedback and reporting (32/88, 39%); (3) motivation (30/88, 34%); and (4) education and coaching (19/88, 22%). This scoping review provides a comprehensive summary of the overall characteristics and use stages of PGHD in older adults with various types and stages of cancer. Future research should emphasize the use of PGHD, which interacts with patients to provide patient-centered care through patient engagement. By enhancing symptom monitoring, enabling timely interventions, and promoting patient involvement, PGHD have the potential to improve the well-being of older adults with cancer, contributing to better health management and quality of life. Therefore, our findings may provide valuable insights into PGHD that health care providers and researchers can use for geriatric cancer care. Open Science Framework Registry OSF.IO/FZRD5; https://doi.org/10.17605/OSF.IO/FZRD5.
Developing Infrastructure to Realize the Value of Patient-Generated Health Data in a Large Integrated Health Care System: The Veterans Health Administration Experience
Patient-generated health data (PGHD) encompass health-related information created, recorded, and gathered by patients in their daily lives, and are distinct from data collected in clinical settings. PGHD can offer insight into patients’ everyday health behaviors and conditions, supporting health management and clinical decision-making. The Veterans Health Administration (VHA) has developed a robust infrastructure to collect PGHD, including automatically collected data from digital sensors and patient-entered data. This effort is guided by comprehensive policy and strategy documents to ensure the secure storage and effective use of PGHD. This paper describes the development and implementation of an infrastructure to support PGHD within the VHA and highlights envisioned clinical and research uses of PGHD to advance health care for US veterans. The PGHD database was built to Fast Healthcare Interoperability Resources standards, facilitating secure data storage and exchange of PGHD. Clinical tools, such as the provider-facing dashboards, make PGHD accessible from the electronic health records. Research and evaluation efforts focus on evaluating PGHD’s impact on patient engagement, clinical outcomes, and health care equity. The VHA’s comprehensive PGHD infrastructure represents a significant advancement in personalized health care and patient engagement. The integration of PGHD into clinical practice can enhance shared decision-making and self-management, while research and evaluation efforts can address how to maximize the benefits of PGHD for veterans. The VHA’s approach sets a benchmark for other US health care systems in leveraging PGHD to achieve the broad aims of enhancing stakeholder health care experiences, improving population health and health equity, and reducing costs.
Understanding Women’s Cardiovascular Health Using MyStrengths+MyHealth: A Patient‐Generated Data Visualization Study of Strengths, Challenges, and Needs Differences
Purpose The purpose of this data visualization study was to identify patterns in patient‐generated health data (PGHD) of women with and without Circulation signs or symptoms. Specific aims were to (a) visualize and interpret relationships among strengths, challenges, and needs of women with and without Circulation signs or symptoms; (b) generate hypotheses based on these patterns; and (c) test hypotheses generated in Aim 2. Design The design of this visualization study was retrospective, observational, case controlled, and exploratory. Methods We used existing de‐identified PGHD from a mobile health application, MyStrengths+MyHealth (N = 383). From the data, women identified with Circulation signs or symptoms (n = 80) were matched to an equal number of women without Circulation signs or symptoms. Data were analyzed using data visualization techniques and descriptive and inferential statistics. Findings Based on the patterns, we generated nine hypotheses, of which four were supported. Visualization and interpretation of relationships revealed that women without Circulation signs or symptoms compared to women with Circulation signs or symptoms had more strengths, challenges, and needs—specifically, strengths in connecting; challenges in emotions, vision, and health care; and needs related to info and guidance. Conclusions This study suggests that visualization of whole‐person health including strengths, challenges, and needs enabled detection and testing of new health patterns. Some findings were unexpected, and perspectives of the patient would not have been detected without PGHD, which should be valued and sought. Such data may support improved clinical interactions as well as policies for standardization of PGHD as sharable and comparable data across clinical and community settings. Clinical Relevance Standardization of patient‐generated whole‐person health data enabled clinically relevant research that included the patients’ perspective.
Perceptions and Willingness of Patients and Caregivers on the Utilization of Patient-Generated Health Data: A Cross-Sectional Survey
Patient-generated health data (PGHD) enhance traditional healthcare by enabling continuous monitoring and supporting personalized care, yet concerns over privacy, security, and integration into existing systems hinder broader adoption. This study examined the perceptions, awareness, and concerns of patients and caregivers regarding PGHD and assessed their willingness to share such data for clinical, research, and commercial purposes. A cross-sectional survey was conducted from 6 to 12 November 2023, involving 400 individuals with experience using PGHD. Participants completed structured questionnaires addressing health information management, PGHD usage, and attitudes toward its application. PGHD was most commonly used by patients with chronic conditions and guardians of minors, with tethered personal health record apps frequently utilized. Respondents identified improved self-management and better access to information as key benefits. However, significant concerns about data privacy and security emerged, especially regarding non-clinical use. Younger adults, particularly those in their 20s, showed lower willingness to engage with PGHD due to heightened privacy concerns. These findings suggest that, while support for clinical use of PGHD is strong, barriers related to trust and consent remain. Addressing privacy concerns and simplifying consent processes will be essential to promote equitable and responsible PGHD utilization across diverse patient populations.
Perceptions of Using Multiple Mobile Health Devices to Support Self‐Management Among Adults With Type 2 Diabetes: A Qualitative Descriptive Study
Purpose This study identified facilitators and barriers pertaining to the use of multiple mobile health (mHealth) devices (Fitbit Alta® fitness tracker, iHealth® glucometer, BodyTrace® scale) that support self‐management behaviors in individuals with type 2 diabetes mellitus (T2DM). Design This qualitative descriptive study presents study participants’ perceptions of using multiple mobile devices to support T2DM self‐management. Additionally, this study assessed whether participants found visualizations, generated from each participant’s health data as obtained from the three separate devices, useful and easy to interpret. Methods Semistructured interviews were completed with a convenience sample of participants (n = 20) from a larger randomized control trial on T2DM self‐management. Interview questions focused on participants’ use of three devices to support T2DM self‐management. A study team member created data visualizations of each interview participant’s health data using RStudio. Results We identified two themes from descriptions of study participants: feasibility and usability. We identified one theme about visualizations created from data obtained from the mobile devices. Despite some challenges, individuals with T2DM found it feasible to use multiple mobile devices to facilitate engagement in T2DM self‐management behaviors. Discussion As mHealth devices become increasingly popular for diabetes self‐management and are integrated into care delivery, we must address issues associated with the use of multiple mHealth devices and the use of aggregate data to support T2DM self‐management. Clinical Relevance Real‐time patient‐generated health data that are easily accessible and readily available can assist T2DM self‐management and catalyze conversations, leading to better self‐management. Our findings lay an important groundwork for understanding how individuals with T2DM can use multiple mHealth devices simultaneously to support self‐management.
Exploring Clinician Experiences With a Digital Platform Supporting Orthopedic Care That Integrates Patient-Generated Health Data: Qualitative Study of Early Users
Digital care platforms that integrate patient-generated health data (PGHD) alongside education and communication tools have been recognized as potential instruments in transforming health care from clinician-centered to a more patient-centered approach. This transformation is driven by the potential of PGHD to provide deeper insights into patients' conditions, facilitate personalized care, improve patient quality of life, reduce inefficiencies in data collection, and empower patients. Yet, actual implementation within clinical settings is still at early stages; therefore, impacts on clinical care remain limited. This study sought to explore the benefits, challenges, and opportunities of integrating PGHD into orthopedic care by analyzing the reflections of early adopter surgeons and physiotherapists who have used a digital care management platform. This qualitative study used thematic analysis of interviews conducted with surgeons and physiotherapists (n=9) from a clinical unit that was among the first to trial \"mymobility,\" an industry-produced software platform (Zimmer Biomet). The participants were recruited using snowball sampling, and interviews were conducted from June to July 2022. The interviews focused on work practices, use of digital tools, experiences with PGHD, and experiences with the mymobility software. Thematic analysis was conducted using NVivo software (QSR International Pty Ltd), focusing on identifying key themes and insights. The study identified several benefits of integrating PGHD into orthopedic care, including improved patient education, enhanced communication and assessment, and increased patient motivation and adherence. However, several challenges were also noted, such as increased clinician workload, questionable data utility, lack of patient centricity, and inability to tailor software to clinical contexts. Suggested opportunities included improving dashboard design, personalizing physiotherapy, and using collected data for improving clinical care. The integration of PGHD into orthopedic care shows promise, largely in areas suggested by the literature. However, significant challenges remain. Future research should focus on addressing solvable challenges, such as improving software user interface design and functionality, while embracing the possibility that some challenges lack clear solutions and will likely require careful balancing of design tensions. The findings highlight the need for ongoing development and refinement of PGHD-inclusive systems to better support clinical practice and patient outcomes.
Real‐world evidence to advance knowledge in pulmonary hypertension: Status, challenges, and opportunities. A consensus statement from the Pulmonary Vascular Research Institute's Innovative Drug Development Initiative's Real‐world Evidence Working Group
This manuscript on real‐world evidence (RWE) in pulmonary hypertension (PH) incorporates the broad experience of members of the Pulmonary Vascular Research Institute's Innovative Drug Development Initiative Real‐World Evidence Working Group. We aim to strengthen the research community's understanding of RWE in PH to facilitate clinical research advances and ultimately improve patient care. Herein, we review real‐world data (RWD) sources, discuss challenges and opportunities when using RWD sources to study PH populations, and identify resources needed to support the generation of meaningful RWE for the global PH community.
Five key strategic priorities of integrating patient generated health data into United Kingdom electronic health records
The integration of patient/person generated health data into clinical applications is a widespread aspiration internationally. However, there is still a range of challenges that inhibit progress in this area. These include technology-related factors (such as interoperability), use-related factors (such as data overload) and characteristics of the strategic environment (such as existing standards). Building on important policy deliberations from the United States that aim to navigate these challenges, we here apply emerging policy frameworks to the United Kingdom and outline five key priority areas that are intended to help policymakers make important strategic decisions in attempting to integrate patient/person generated data into electronic health records.
Assessing the relative validity of a new, web-based, self-administered 24 h dietary recall in a French-Canadian population
To assess the relative validity of a new, web-based, self-administered 24 h dietary recall, the R24W, for assessment of energy and nutrient intakes among French Canadians. Each participant completed a 3d food record (FR) and the R24W on three occasions over a 4-week period. Intakes of energy and of twenty-four selected nutrients assessed by both methods were compared. Québec City metropolitan area. Fifty-seven women and fifty men (mean (sd) age: 47·2 (13·3) years). Equivalent proportions of under-reporters were found with the R24W (15·0%) and the FR (23·4%). Mean (sd) energy intake from the R24W was 7·2% higher than that from the FR (10 857 (3184) kJ/d (2595 (761) kcal/d) v. 10 075 (2971) kJ/d (2408 (710) kcal/d); P<0·01). Significant differences in mean nutrient intakes between the R24W and the FR ranged from -54·8% (i.e. lower value with R24W) for niacin to +40·0% (i.e. higher value with R24W) for alcohol. Sex- and energy-adjusted deattenuated correlations between the two methods were significant for all nutrients except Zn (range: 0·35-0·72; P<0·01). Cross-classification demonstrated that 40·0% of participants were classified in the same quartile with both methods, while 40·0% were classified in the adjacent quartile and only 3·6% were grossly misclassified (1st v. 4th quartile). Analysis of Bland-Altman plots revealed proportional bias between the two assessment methods for 8/24 nutrients. These data suggest that the R24W presents an acceptable relative validity as compared with the FR for estimating usual dietary intakes in a cohort of French Canadians.