Remote Monitoring of Patient- and Family-Generated Health Data in Pediatrics.

In this article, we provide an overview of remote monitoring of pediatric PGHD and family-generated health data, including its current uses, future opportunities, and implementation resources.

Patient generated health data use in clinical practice: A systematic review.

BACKGROUND: 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. PURPOSE: We assessed the current evidence of the impact of PGHD use in clinical practice and provide recommendations for the formal integration of PGHD in clinical care. METHODS: We searched PubMed, Ovid, Embase, CINAHL, Web of Science, and Scopus up to May 2018. Inclusion criteria were applied and four reviewers screened titles and abstracts and consequently full articles. FINDINGS: Our systematic literature review identified 21 studies that examined the use of PGHD in clinical settings. Integration of PGHD into electronic records was extremely limited, and decision support capabilities were for the most part basic. DISCUSSION: PGHD and other types of patient-reported data will be part of the health care system narrative and we must continue efforts to understand its impact on health outcomes, costs, and patient satisfaction. Nursing scientists need to lead the process of defining the role of PGHD in the era of precision health.

Measurement error correction and sensitivity analysis in longitudinal dietary intervention studies using an external validation study.

In lifestyle intervention trials, where the goal is to change a participant's weight or modify their eating behavior, self-reported diet is a longitudinal outcome variable that is subject to measurement error. We propose a statistical framework for correcting for measurement error in longitudinal self-reported dietary data by combining intervention data with auxiliary data from an external biomarker validation study where both self-reported and recovery biomarkers of dietary intake are available. In this setting, dietary intake measured without error in the intervention trial is missing data and multiple imputation is used to fill in the missing measurements. Since most validation studies are cross-sectional, they do not contain information on whether the nature of the measurement error changes over time or differs between treatment and control groups. We use sensitivity analyses to address the influence of these unverifiable assumptions involving the measurement error process and how they affect inferences regarding the effect of treatment. We apply our methods to self-reported sodium intake from the PREMIER study, a multi-component lifestyle intervention trial.

Exchanging personal health data with electronic health records: A standardized information model for patient generated health data and observations of daily living.

OBJECTIVE: The development of a middleware information model to facilitate better interoperability between Personal and Electronic Health Record systems in order to allow exchange of Patient Generated Health Data and Observations of Daily Leaving between patients and providers in order to encourage patient self-management. MATERIALS AND METHODS: An information model based on HL7 standards for interoperability has been extended to support PGHD and ODL data types. The new information models uses HL7 CDA to represent data, is instantiated as a Protégé ontology and uses a set of mapping rules to transfer data between Personal and Electronic Health Record systems. RESULTS: The information model was evaluated by executing a set of use case scenarios containing data exported from three consumer health apps, transformed to CDA according to developed mapping rules and validated against a CDA schema. This allowed various challenges to emerge as well as revealed gaps in current standards in use and the information model has been refined accordingly. DISCUSSION AND CONCLUSION: Our proposed middleware solution offers a number of advantages. When modifications are made to either a Personal or Health Electronic Health Record system or any integrated consumer app, they can be incorporated by altering only the instantiation of the information model. Our proposition uses current standards in use such as CDA. The solution is applicable to any EHR system with HL7 CDA support.

[Reproducibility of bladder diary in patients with multiple sclerosis]. / Reproductibilité du calendrier mictionnel chez les patients atteints de sclérose en plaques. Étude prospective monocentrique.

INTRODUCTION: Multiple sclerosis (MS) is a neurological condition characterized by variable levels of symptoms. This variability could also affect bladder dysfunction and impact on the reproducibility or stability of bladder diary (BD). The aim of the study is to investigate the reproducibility and reliability of BD in MS, and then determine its linked factors. METHODS: The MS patient provided a 21 days BD and they documented the time of every void. The main criterion was assessed by voiding frequency, represented by the coefficient of variation (CV=average/standard deviation), expressed as a percentage. Two groups were described: stable BD group (CV≤15 %) and instable BD group (CV>15 %). Secondary criteria were completion of BD (complete or not) and the difference of voiding frequency variation between weekend and week. RESULTS: Thirty-one patients were included (mean age 51.06 years, SD 11.33) with 65 % of women. Mean CV is 23 % (SD 0.11). The mean completion of BD was 19.35 days (SD 3.99). 8 patients had a CV≤15 %. Stable group was older than instable group (P=0.03). There was no other difference between the 2 groups. There is a strong correlation between mean voiding frequency weekend and week (ρ=0.94, P<0.05). The longer duration of BD, the less reliability is notified. CONCLUSION: BD is not a stable reproducible in MS population. Both lack of compliance or variability of LUTS in MS may explain the unreliability of BD. However, BD utility should be discussed in this population. LEVEL OF EVIDENCE: 4.