Impact of Age, Education Level and Occupation on the Ability to Use the ICIQ-bladder Diary: Results From A Community Cohort Study Using a Predefined Clinical History.

OBJECTIVE: To assess difficulties in filling the International Consultation on Incontinence Questionnaire Bladder Diary (ICIQ-BD), determining the most troublesome items and patients' characteristics (age, education level, and professional activity) related to these difficulties. METHODS: A text composed of a clinical history of a fictitious patient with Lower Urinary Tract Symptoms (LUTS) was designed. 95 healthy volunteers (49 females, 46 males, mean age 45.6 ± 17.3 years) were asked to fill in the ICIQ-BD according to the data from the fictitious clinical history. Filling errors were analyzed, and patients' demographic characteristics tested as predictors. RESULTS: Bladder Sensation Score is the most problematic item of the ICIQ-BD, with only 38% of patients accurately filling this item. No association was found between total number of errors and age or education level, but participants working in less specialized professions had more difficulty in filling the BD (mean: 7.00 vs 3.94 errors, P= .002). CONCLUSION: ICIQ-BD is a reliable tool to assess for LUTS, but filling the Bladder Sensation Score item was more likely to be incorrectly filled by manual workers and volunteers with less intellectually demanding current professions.

Design and Evaluation of the Electronic Patient-Generated Index.

BACKGROUND: The patient-generated index (PGI) is an individualized measure of health-related quality of life. Previous work testing the PGI in the oncology setting identified threats to content validity due to navigational and computational completion errors using the paper format. OBJECTIVE: The purpose of this pilot study was to refine and evaluate the usability and acceptability of an electronic PGI (ePGI) prototype in the outpatient radiation oncology setting. METHODS: This pilot study used adaptive agile web design, cognitive interview, and survey methods. RESULTS: Three iterations of testing and refining the ePGI were required. Fifteen patients completed the refined ePGI using touch screen tablets with little or no coaching required. Nearly all participants rated the ePGI as "easy" or "very" easy to use, understand, and navigate. Up to one half stated they did not share this type of information with their clinician but felt the information on the ePGI would be useful to discuss when making decisions about their care. Eight clinicians participated, all of whom felt the ePGI was a useful tool to initiate dialogue about quality of life issues, reveal infrequent or unusual effects of treatment, and assist with symptom management. DISCUSSION: The pilot study indicates the ePGI may be useful for use at the point of care. Larger studies are needed to explore the influence it may have in decision-making and restructuring patient/provider communication.

Patient-generated health data and electronic health record integration: protocol for a scoping review.

INTRODUCTION: The 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 ANALYSIS: This 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 DISSEMINATION: Database 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.

Electronic Patient-Generated Health Data to Facilitate Disease Prevention and Health Promotion: Scoping Review.

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.

Big Data From Small Devices: The Future of Smartphones in Oncology.

Technological advancements in the capabilities of modern smartphones offer tremendous potential to generate big data from small devices that could influence oncologists' decision-making. Here we describe the value of patient-generated health data (PGHD) that can be captured using mobile devices. We comment on the current use of smartphones in oncology clinical research and describe how smartphones will bring big data into the oncology clinic by enabling continuous patient monitoring, information sharing, and personalized clinical decision making in cancer care. Lastly, we describe practical considerations about how we can access and store PGHD in the future, describing how to harness the clinical value of PGHD and comment on the emerging applications for digital biomarkers captured by smartphones.

Technological Advances in Clinical Definition and Surveillance Methodology for Surgical Site Infection Incorporating Surgical Site Imaging and Patient-Generated Health Data.

Background: Surgical site infection (SSI) continues to be a common and costly complication after surgery. The current commonly used definitions of SSI were devised more than two decades ago and do not take in to account more modern technology that could be used to make diagnosis more consistent and precise. Patient-generated health data (PGHD), including digital imaging, may be able to fulfill this objective. Methods: The published literature was examined to determine the current state of development in terms of using digital imaging as an aide to diagnose SSI. This information was used to devise possible methodology that could be used to integrate digital images to more objectively define SSI, as well as using these data for both surveillance activities and clinical management. Results: Digital imaging is a highly promising means to help define and diagnose SSI, particularly in remote settings. Multiple groups continue to actively study these emerging technologies, however, present methods remain based generally on subjective rather than objective observations. Although current images may be useful on a case-by-case basis, similar to physical examination information, integrating imaging in the definition of SSI to allow more automated diagnosis in the future will require complex image analysis combined with other available quantified data. Conclusions: Digital imaging technology, once adequately evolved, should become a cornerstone of the criteria for both the clinical and surveillance definitions of SSI.

Metodologia para realizar e interpretar uma revisão sistemática e metanálise individual de dados de participantes / Methodology to perform and interpret a systematic review and individual meta-analysis of participants' data

Metanálise é o método estatístico utilizado na revisão sistemática para integrar os resultados dos estudos incluídos e aumentar o poder estatístico da pesquisa primária.Estudos de metanálise, decorrentes de uma revisão sistemática, envolvem a combinação e a análise de evidências, que são utilizadas para produzir resultados baseados em conjunto de pesquisas prévias. Métodos tradicionais de metanálise sintetizam os dados agregados obtidos de publicações de estudo, como estimativa de efeito de tratamento (odds ratio, risco relativo) e sua incerteza associada (erro padrão ou intervalo de confiança). Uma abordagem alternativa é a metanálise individual de dados de participantes ou de pacientes, nos quais os dados de nível individual bruto para cada estudo são obtidos e utilizados para síntese. O objetivo deste artigo é apresentar, de forma metodológica, como realizar e interpretar uma revisão sistemática e uma metanálise individual de dados de participantes. (AU)

A meta-analysisis the statistical method used in the systematic review to integrate the result sof includeds tudies, and to increase the statistical power of primary research. Meta-analysis studies, stemming from a systematic review, involve the combination and analysis of evidence that are used to produce results based on a set of previous research. Traditional meta-analysis methods synthesize aggreg ate data obtained from study publications, such as anestimate of treatment effect (odds ratio, relative risk) and the ir associated uncertainty (standard error or confidence interval). An alternative approach isthe individual meta-analysis of participants' or patients' data, in whichgross individual-level data for eachstudy are obtained and used for synthesis. The objective of this articleis to present a method o logical way of performing and in ter preting a systematic review and individual meta-analysisof the participants' data. (AU)

Electronic patient-generated health data to facilitate prevention and health promotion: a scoping review protocol.

INTRODUCTION: Rapidly 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 ANALYSIS: Our 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 DISSEMINATION: The 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.

Assessing the relative validity of a new, web-based, self-administered 24 h dietary recall in a French-Canadian population.

OBJECTIVE: 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. DESIGN: 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. SETTING: Québec City metropolitan area. SUBJECTS: Fifty-seven women and fifty men (mean (sd) age: 47·2 (13·3) years). RESULTS: 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. CONCLUSIONS: 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.

Improved Hand Function, Self-Rated Health, and Decreased Activity Limitations: Results After a Two-Month Hand Osteoarthritis Group Intervention.

OBJECTIVE: To evaluate the effects on hand function, activity limitations, and self-rated health of a primary care hand osteoarthritis (OA) group intervention. Hand OA causes pain, impaired mobility, and reduced grip force, which cause activity limitations. OA group interventions in primary care settings are sparsely reported. METHODS: Sixty-four individuals with hand OA agreed to participate; 15 were excluded due to not fulfilling the inclusion criteria. The 49 remaining (90% female) participated in an OA group intervention at a primary care unit with education, paraffin wax bath, and hand exercise over a 6-week period. Data were collected at baseline, end of intervention, and after 1 year. Instruments used were the Grip Ability Test (GAT), the Signals of Functional Impairment (SOFI), dynamometry (grip force), hand pain at rest using a visual analog scale (VAS), the Patient-Specific Functional Scale (PSFS), the Quick Disabilities of the Arm, Shoulder, and Hand (Quick-DASH), and the EuroQol VAS (EQ VAS). Data were analyzed using nonparametric statistics. RESULTS: Hand function, activity limitation, and self-rated health significantly improved from baseline to end of intervention, grip force (right hand: P < 0.001; left hand: P = 0.008), SOFI (P = 0.011), GAT (P < 0.001), hand pain at rest (P < 0.001), PSFS (1: P = 0.008, 2: P < 0.001, and 3: P = 0.004), Quick-DASH (P = 0.001), and EQ VAS (P = 0.039), and the effects were sustained after 1 year. CONCLUSION: The hand OA group intervention in primary care improves hand function, activity limitation, and self-rated health. The benefits are sustained 1 year after completion of the intervention.

Data-driven health management: reasoning about personally generated data in diabetes with information technologies.

OBJECTIVE: To investigate how individuals with diabetes and diabetes educators reason about data collected through self-monitoring and to draw implications for the design of data-driven self-management technologies. MATERIALS AND METHODS: Ten individuals with diabetes (six type 1 and four type 2) and 2 experienced diabetes educators were presented with a set of self-monitoring data captured by an individual with type 2 diabetes. The set included digital images of meals and their textual descriptions, and blood glucose (BG) readings captured before and after these meals. The participants were asked to review a set of meals and associated BG readings, explain differences in postprandial BG levels for these meals, and predict postprandial BG levels for the same individual for a different set of meals. Researchers compared conclusions and predictions reached by the participants with those arrived at by quantitative analysis of the collected data. RESULTS: The participants used both macronutrient composition of meals, most notably the inclusion of carbohydrates, and names of dishes and ingredients to reason about changes in postprandial BG levels. Both individuals with diabetes and diabetes educators reported difficulties in generating predictions of postprandial BG; their predictions varied in their correlations with the actual captured readings from r = 0.008 to r = 0.75. CONCLUSION: Overall, the study showed that identifying trends in the data collected with self-monitoring is a complex process, and that conclusions reached by both individuals with diabetes and diabetes educators are not always reliable. This suggests the need for new ways to facilitate individuals' reasoning with informatics interventions.