Patient generated health data use in clinical practice: A systematic review.
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ABSTRACT:
SUBMITTER: Demiris G
PROVIDER: S-EPMC6697140 | biostudies-literature | 2019 Jul - Aug
REPOSITORIES: biostudies-literature
Publications
Patient generated health data use in clinical practice: A systematic review.
Demiris George G Iribarren Sarah J SJ Sward Katherine K Lee Solim S Yang Rumei R
Nursing outlook 20190426 4
<h4>Background</h4>Precision health calls for collecting and analyzing large amounts of data to capture an individual's unique behavior, lifestyle, genetics, and environmental context. The diffusion of digital tools has led to a significant growth of patient generated health data (PGHD), defined as health-related data created, gathered or inferred by or from patients and for which the patient controls data collection and data sharing.<h4>Purpose</h4>We assessed the current evidence of the impact ...[more]
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Project description:Recent advancements in consumer directed personal computing technology have led to the generation of biomedically-relevant data streams with potential health applications. This has catalyzed international interest in Patient Generated Health Data (PGHD), defined as "health-related data - including health history, symptoms, biometric data, treatment history, lifestyle choices, and other information-created, recorded, gathered, or inferred by or from patients or their designees (i.e. care partners or those who assist them) to help address a health concern."(Shapiro et al., 2012) PGHD offers several opportunities to improve the efficiency and output of clinical trials, particularly within oncology. These range from using PGHD to understand mechanisms of action of therapeutic strategies, to understanding and predicting treatment-related toxicity, to designing interventions to improve adherence and clinical outcomes. To facilitate the optimal use of PGHD, methodological research around considerations related to feasibility, validation, measure selection, and modeling of PGHD streams is needed. With successful integration, PGHD can catalyze the application of "big data" to cancer clinical research, creating both "n of 1" and population-level observations, and generating new insights into the nature of health and disease.
| S-EPMC5528746 | biostudies-other
Project description:ObjectiveThe 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 methodsWe 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.ResultsThirty-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.ConclusionThe 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.
| S-EPMC7309248 | biostudies-literature
Project description:BackgroundIn the era of digital health information technology, there has been a proliferation of devices that collect patient-generated health data (PGHD), including consumer blood pressure (BP) monitors. Despite their widespread use, it remains unclear whether such devices can improve health outcomes.ObjectiveWe performed a systematic review of the literature on consumer BP monitors that collect PGHD for managing hypertension to summarize their clinical impact on health and surrogate outcomes. We focused particularly on studies designed to measure the specific effect of using a BP monitor independent of cointerventions. We have also summarized the process and consumer experience outcomes.MethodsAn information specialist searched PubMed, MEDLINE, and Embase for controlled studies on consumer BP monitors published up to May 12, 2020. We assessed the risk of bias using an adapted 9-item appraisal tool and performed a narrative synthesis of the results.ResultsWe identified 41 different types of BP monitors used in 49 studies included for review. Device engineers judged that 38 (92%) of those devices were similar to the currently available consumer BP monitors. The median sample size was 222 (IQR 101-416) participants, and the median length of follow-up was 6 (IQR 3-12) months. Of the included studies, 18 (36%) were designed to isolate the clinical effects of BP monitors; 6 of the 18 (33%) studies evaluated health outcomes (eg, mortality, hospitalizations, and quality of life), and data on those outcomes were unclear. The lack of clarity was due to low event rates, short follow-up duration, and risk of bias. All 18 studies that isolated the effect of BP monitors measured both systolic and diastolic BP and generally demonstrated a decrease of 2 to 4 mm Hg in systolic BP and 1 to 3 mm Hg in diastolic BP compared with non-BP monitor groups. Adherence to using consumer BP monitors ranged from 38% to 89%, and ease of use and satisfaction ratings were generally high. Adverse events were infrequent, but there were a few technical problems with devices (eg, incorrect device alerts).ConclusionsOverall, BP monitors offer small benefits in terms of BP reduction; however, the health impact of these devices continues to remain unclear. Future studies are needed to examine the effectiveness of BP monitors that transmit data to health care providers. Additional data from implementation studies may help determine which components are critical for sustained BP improvement, which in turn may improve prescription decisions by clinicians and coverage decisions by policy makers.
| S-EPMC9112087 | biostudies-literature
Project description:This study examines at-home monitoring of patient-generated phsyiologic health data and patient-reported outcomes. Patient-generated health data using at-home monitoring devices and smart device applications are used more and more to measure value and quality in cancer care. This trial may show whether at-home monitoring programs can improve the care of patients after hospital discharge from surgery.
| 2347952 | ecrin-mdr-crc
Project description:BackgroundEmpirical evidence suggests data and insights from the clinical practice guidelines and clinical quality registries are not being fully utilised, leaving health service managers, clinicians and providers without clear guidance on how best to improve healthcare delivery. This lack of uptake of existing research knowledge represents low value to the healthcare system and needs to change.MethodsFive electronic databases (MEDLINE, Embase, CINAHL, Cochrane Central and Cochrane Database of Systematic Reviews) were systematically searched. Included studies were published between 2000 and 2020 reporting on the attributes, evidence usage and impact of clinical practice guidelines and clinical quality registries on health service delivery.ResultsTwenty-six articles including one randomised controlled trial, eight before-and-after studies, eight case studies/reviews, five surveys and four interview studies, covering a wide range of medical conditions and conducted in the USA, Australia and Europe, were identified. Five complementary strategies were derived to maximise the likelihood of best practice health service delivery: (1) feedback and transparency, (2) intervention sustainability, (3) clinical practice guideline adherence, (4) productive partnerships and (5) whole-of-team approach.ConclusionThese five strategies, used in context-relevant combinations, are most likely to support the application of existing high-quality data, adding value to health service delivery. The review highlighted the limitations of study design in opportunistic registry studies that do not produce clear, usable evidence to guide changes to health service implementation practices. Recommendations include exploration of innovative methodologies, improved coordination of national registries and the use of incentives to encourage guideline adherence and wider dissemination of strategies used by successful registries.
| S-EPMC9644489 | biostudies-literature
Project description:BACKGROUND: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. OBJECTIVE: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. METHODS: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. RESULTS: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. CONCLUSIONS: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.
| S-EPMC6914107 | biostudies-literature
Project description:IntroductionThe objective of this study is to determine the extent and describe the nature of patient-generated health data (PGHD) integration into electronic health records (EHRs) using systematic scoping methods to review the available literature. PGHD have the potential to enhance decision making by providing the valuable information that may not be ordinarily captured during a routine care visit. These data which are captured from mobile devices, such as smartphones, activity trackers and other sensors, should be integrated into clinical workflows to allow for optimal use by clinicians.Methods and analysisThis study aims to conduct a rigorous scoping review to explore evidence related to the integration of PGHD into EHRs. Using the framework developed by Arksey and O'Malley, we will create a systematic search strategy, chart data from the relevant articles, and use a qualitative, thematic approach to analyse the data. This review will enable the identification of types of integration and describe challenges and barriers to integrating PGHD.Ethics and disseminationDatabase searches will be initiated in June 2019. The review is expected to be completed by October 2019. As the content of the full-text articles emerges, the authors will summarise the characteristics related to the integration of PGHD. The findings of this scoping review will identify research gaps and present implications for future research.
| S-EPMC6937018 | biostudies-literature
Project description:IntroductionRapidly expanding digital innovations transform the perception, reception and provision of health services. Simultaneously, health system challenges underline the need for patient-centred, empowering and citizen-engaging care, which facilitates a focus on prevention and health promotion. Through enhanced patient-engagement, patient-provider interactions and reduced information gaps, electronic patient-generated health data (PGHD) may facilitate both patient-centeredness and preventive scare. Despite that, comprehensive knowledge syntheses on their utilisation for prevention and health promotion purposes are lacking. The review described in this protocol aims to fill that gap.Methods and analysisOur methodology is guided by Arksey and O' Malley's methodological framework for scoping reviews, as well as its advanced version by Levac, Colquhoun and O'Brien. Seven electronic databases will be systematically searched using predefined keywords. Key electronic journals will be hand searched, while reference lists of included documents and grey literature sources will be screened thoroughly. Two independent reviewers will complete study selection and data extraction. One of the team's senior research members will act as a third reviewer and make the final decision on disputed documents. We will include literature with a focus on electronic PGHD and linked to prevention and health promotion. Literature on prevention that is driven by existing discomfort or disability goes beyond the review's scope and will be excluded. Analysis will be narrative and guided by Shapiro et al's adapted framework on PGHD flow.Ethics and disseminationThe scoping review described in this protocol aims to establish a baseline understanding of electronic PGHD generation, collection, communication, sharing, interpretation, utilisation, context and impact for preventive purposes. The chosen methodology is based on the use of publicly available information and does not require ethical approval. Review findings will be disseminated in digital health conferences and symposia. Results will be published and additionally shared with relevant local and national authorities.
| S-EPMC6089308 | biostudies-literature
Project description:Many healthcare professionals use smartphones and tablets to inform patient care. Contemporary research suggests that handheld computers may support aspects of clinical diagnosis and management. This systematic review was designed to synthesise high quality evidence to answer the question; Does healthcare professionals' use of handheld computers improve their access to information and support clinical decision making at the point of care?A detailed search was conducted using Cochrane, MEDLINE, EMBASE, PsycINFO, Science and Social Science Citation Indices since 2001. Interventions promoting healthcare professionals seeking information or making clinical decisions using handheld computers were included. Classroom learning and the use of laptop computers were excluded. Two authors independently selected studies, assessed quality using the Cochrane Risk of Bias tool and extracted data. High levels of data heterogeneity negated statistical synthesis. Instead, evidence for effectiveness was summarised narratively, according to each study's aim for assessing the impact of handheld computer use.We included seven randomised trials investigating medical or nursing staffs' use of Personal Digital Assistants. Effectiveness was demonstrated across three distinct functions that emerged from the data: accessing information for clinical knowledge, adherence to guidelines and diagnostic decision making. When healthcare professionals used handheld computers to access clinical information, their knowledge improved significantly more than peers who used paper resources. When clinical guideline recommendations were presented on handheld computers, clinicians made significantly safer prescribing decisions and adhered more closely to recommendations than peers using paper resources. Finally, healthcare professionals made significantly more appropriate diagnostic decisions using clinical decision making tools on handheld computers compared to colleagues who did not have access to these tools. For these clinical decisions, the numbers need to test/screen were all less than 11.Healthcare professionals' use of handheld computers may improve their information seeking, adherence to guidelines and clinical decision making. Handheld computers can provide real time access to and analysis of clinical information. The integration of clinical decision support systems within handheld computers offers clinicians the highest level of synthesised evidence at the point of care. Future research is needed to replicate these early results and to identify beneficial clinical outcomes.
| S-EPMC4099138 | biostudies-literature
Project description:PURPOSE:The CONSORT extension for patient reported outcomes (PROs) aims to improve reporting, but guidance on the optimal integration with clinical data is lacking. This study examines in detail the reporting of PROs and clinical data from randomized controlled trials (RCTs) in gastro-intestinal cancer to inform design and reporting of combined PRO and clinical data from trials to improve the 'take home' message for clinicians to use in practice. MATERIALS AND METHODS:The case study was undertaken in gastro-intestinal cancer trials. Well-conducted RCTs reporting PROs with validated instruments were identified and categorized into those combining PRO and clinical data in a single paper, or those separating data into linked primary and supplemental papers. Qualitative methods were developed to examine reporting of the critical interpretation of the trial results (trial exegesis) in the papers in relation of the PRO and clinical outcomes and applied to each publication category. Results were used to inform recommendations for practice. RESULTS:From 1917 screened abstracts, 49 high quality RCTs were identified reported in 36 combined and 15 linked primary and supplemental papers. In-depth analysis of manuscript text identified three categories for understanding trial exegesis: where authors reported a "detailed", "general", or absent PRO rationale and integrated interpretation of clinical and PRO results. A total of 11 (30%) and 6 (16%) combined papers reported "detailed" PRO rationale and integrated interpretation of results although only 2 (14%) and 1 (7%) primary papers achieved the same standard respectively. Supplemental papers provide better information with 11 (73%) and 3 (20%) achieving "detailed" rationale and integrated interpretation of results. Supplemental papers, however, were published a median of 20 months after the primary RCT data in lower impact factor journals (median 16.8 versus 5.2). CONCLUSION:It is recommended that single papers, with detailed PRO rationale and integrated PRO and clinical data are published to optimize trial exegesis. Further work to examine whether this improves the use of PRO data to inform practice is needed.
| S-EPMC5003376 | biostudies-other