FHH Quick App Review: How Can a Quality Review Process Assist Primary Care Providers in Choosing a Family Health History App for Patient Care?

Family health history (FHH) is a data type serving risk assessment, diagnosis, research, and preventive health. Despite technological leaps in genomic variant detection, FHH remains the most accessible, least expensive, and most practical assessment tool for assessing risks attributable to genetic inheritance. The purpose of this manuscript is to outline a process to assist primary care professionals in choosing FHH digital tools for patient care based on the new ISO/TS 82304-2 Technical Specification (TS), which is a recently developed method to determine eHealth app quality. With a focus on eHealth in primary care, we applied the quality label concept to FHH, and how a primary care physician can quickly review the quality and reliability of an FHH app. Based on our review of the ISO TS's 81 questions, we compiled a list of 25 questions that are recommended to be more succinct as an initial review. We call this process the FHH Quick App Review. Our 'informative-only' 25 questions do not produce a quality score, but a guide to complete an initial review of FHH apps. Most of the questions are straight from the ISO TS, some are modified or de novo. We believe the 25 questions are not only relevant to FHH app reviews but could also serve to aid app development and clinical implementation.

The classification of scoliosis braces developed by SOSORT with SRS, ISPO, and POSNA and approved by ESPRM.

PURPOSE: Studies have shown that bracing is an effective treatment for patients with idiopathic scoliosis. According to the current classification, almost all braces fall in the thoracolumbosacral orthosis (TLSO) category. Consequently, the generalization of scientific results is either impossible or misleading. This study aims to produce a classification of the brace types. METHODS: Four scientific societies (SOSORT, SRS, ISPO, and POSNA) invited all their members to be part of the study. Six level 1 experts developed the initial classifications. At a consensus meeting with 26 other experts and societies' officials, thematic analysis and general discussion allowed to define the classification (minimum 80% agreement). The classification was applied to the braces published in the literature and officially approved by the 4 scientific societies and by ESPRM. RESULTS: The classification is based on the following classificatory items: anatomy (CTLSO, TLSO, LSO), rigidity (very rigid, rigid, elastic), primary corrective plane (frontal, sagittal, transverse, frontal & sagittal, frontal & transverse, sagittal & transverse, three-dimensional), construction-valves (monocot, bivalve, multisegmented), construction-closure (dorsal, lateral, ventral), and primary action (bending, detorsion, elongation, movement, push-up, three points). The experts developed a definition for each item and were able to classify the 15 published braces into nine groups. CONCLUSION: The classification is based on the best current expertise (the lowest level of evidence). Experts recognize that this is the first edition and will change with future understanding and research. The broad application of this classification could have value for brace research, education, clinical practice, and growth in this field.

Establishing consensus on the best practice guidelines for the use of bracing in adolescent idiopathic scoliosis.

STUDY DESIGN: Survey. OBJECTIVES: Bracing is the mainstay of conservative treatment in Adolescent Idiopathic Scoliosis (AIS). The purpose of this study was to establish best practice guidelines (BPG) among a multidisciplinary group of international bracing experts including surgeons, physiatrists, physical therapists, and orthotists utilizing formal consensus building techniques. Currently, there is significant variability in the practice of brace treatment for AIS and, therefore, there is a strong need to develop BPG for bracing in AIS. METHODS: We utilized the Delphi process and the nominal group technique to establish consensus among a multidisciplinary group of bracing experts. Our previous work identified areas of variability in brace treatment that we targeted for consensus. Following a review of the literature, three iterative surveys were administered. Topics included bracing goals, indications for starting and discontinuing bracing, brace types, brace prescription, radiographs, physical activities, and physiotherapeutic scoliosis-specific exercises. A face-to-face meeting was then conducted that allowed participants to vote for or against inclusion of each item. Agreement of 80% throughout the surveys and face-to-face meeting was considered consensus. Items that did not reach consensus were discussed and revised and repeat voting for consensus was performed. RESULTS: Of the 38 experts invited to participate, we received responses from 32, 35, and 34 for each survey, respectively. 11 surgeons, 4 physiatrists, 8 physical therapists, 3 orthotists, and 1 research scientist participated in the final face-to-face meeting. Experts reached consensus on 67 items across 10 domains of bracing which were consolidated into the final best practice recommendations. CONCLUSIONS: We believe that adherence to these BPG will lead to fewer sub-optimal outcomes in patients with AIS by reducing the variability in AIS bracing practices, and provide a framework future research. LEVEL OF EVIDENCE: Level IV.

Retraction Note: Brace classification study group (BCSG): part one - definitions and atlas.

[This retracts the article DOI: 10.1186/s13013-016-0102-y.].

Experience with Integrating Diagnostic Decision Support Software with Electronic Health Records: Benefits versus Risks of Information Sharing.

INTRODUCTION: Reducing misdiagnosis has long been a goal of medical informatics. Current thinking has focused on achieving this goal by integrating diagnostic decision support into electronic health records. METHODS: A diagnostic decision support system already in clinical use was integrated into electronic health record systems at two large health systems, after clinician input on desired capabilities. The decision support provided three outputs: editable text for use in a clinical note, a summary including the suggested differential diagnosis with a graphical representation of probability, and a list of pertinent positive and pertinent negative findings (with onsets). RESULTS: Structured interviews showed widespread agreement that the tool was useful and that the integration improved workflow. There was disagreement among various specialties over the risks versus benefits of documenting intermediate diagnostic thinking. Benefits were most valued by specialists involved in diagnostic testing, who were able to use the additional clinical context for richer interpretation of test results. Risks were most cited by physicians making clinical diagnoses, who expressed concern that a process that generated diagnostic possibilities exposed them to legal liability. DISCUSSION AND CONCLUSION: Reconciling the preferences of the various groups could include saving only the finding list as a patient-wide resource, saving intermediate diagnostic thinking only temporarily, or adoption of professional guidelines to clarify the role of decision support in diagnosis.

Brace Classification Study Group (BCSG): part one - definitions and atlas.

BACKGROUND: The current increase in types of scoliosis braces defined by a surname or a town makes scientific classification essential. Currently, it is a challenge to compare braces and specify the indications of each brace. A precise definition of the characteristics of current braces is needed. As such, the International Society for Scoliosis Orthopedic and Rehabilitation Treatment (SOSORT) mandated the Brace Classification Study Group (BCSG) to address the pertinent terminology and brace classification. As such, the following study represents the first part of the SOSORT consensus in addressing the definitions and providing a visual atlas of bracing. METHODS: After a short introduction on the braces, the aim of the BCSG is described and its policies/general consideration are outlined. The BSCG endeavor embraces the very important SOSORT - Scoliosis Research Society cooperation, the history of which is also briefly narrated. This report contains contributions from a multidisciplinary panel of 17 professionals who are part of the BCSG. The BCSG introduced several pertinent domains to characterize bracing systems. The domains are defined to allow for analysis of each brace system. RESULTS: A first approach to brace classification based on some of these proposed domains is presented. The BCSG has reached a consensus on 139 terms related to bracing and has provided over 120 figures to serve as an atlas for educational purposes. CONCLUSIONS: This is the first clinical terminology tool for bracing related to scoliosis based on the current scientific evidence and formal multidisciplinary consensus. A visual atlas of various brace types is also provided.

Profiling Fast Healthcare Interoperability Resources (FHIR) of Family Health History based on the Clinical Element Models.

In this study we developed a Fast Healthcare Interoperability Resources (FHIR) profile to support exchanging a full pedigree based family health history (FHH) information across multiple systems and applications used by clinicians, patients, and researchers. We used previously developed clinical element models (CEMs) that are capable of representing the FHH information, and derived essential data elements including attributes, constraints, and value sets. We analyzed gaps between the FHH CEM elements and existing FHIR resources. Based on the analysis, we developed a profile that consists of 1) FHIR resources for essential FHH data elements, 2) extensions for additional elements that were not covered by the resources, and 3) a structured definition to integrate patient and family member information in a FHIR message. We implemented the profile using an open-source based FHIR framework and validated it using patient-entered FHH data that was captured through a locally developed FHH tool.

Brace modifications that can result in improved curve correction in idiopathic scoliosis.

BACKGROUND AND AIM: The purpose of this paper is to share with scoliosis professionals the X-rays of different pad placement levels associated with improved curve correction in a case of idiopathic scoliosis (IS). Scoliosis braces of all types and brands utilize common principles of construction that ensure good fit and function. Equally important to the end result is good patient follow-up care and brace quality control by the orthotist. DESIGN AND METHODS: This report reviewed the case of an 11-year-old girl diagnosed with IS, focusing on the in and out-of-brace x-rays, as well as the fit and function of the braces. The first brace was a TLSO-type, the second a Cheneau-type brace using a B1 model following the Rigo classification of scoliosis. RESULTS: The first TLSO-type brace presented an in-brace X-ray that showed a curve increase. The Cheneau-type scoliosis brace reduced the Cobb angles over 50%. CONCLUSIONS: The biomechanical changes consequent to modifications in brace design and pad placements appeared to have improved the scoliosis and reduced the Cobb angles in this case. An orthotist must provide optimal fit and function of the brace which was prescribed by the referring physician. Adherence to certain basic design principles, and close follow up by the orthotist-especially during growth spurts - are critical to its effectiveness. Specifically, a skilled orthotist must be experienced with the particular brace-type, apply these principles, maintain a good working relationship with both physician and patient to ensure timely brace adjustments essential to continued brace comfort and efficacy.

Some experiences and opportunities for big data in translational research.

Health care has become increasingly information intensive. The advent of genomic data, integrated into patient care, significantly accelerates the complexity and amount of clinical data. Translational research in the present day increasingly embraces new biomedical discovery in this data-intensive world, thus entering the domain of "big data." The Electronic Medical Records and Genomics consortium has taught us many lessons, while simultaneously advances in commodity computing methods enable the academic community to affordably manage and process big data. Although great promise can emerge from the adoption of big data methods and philosophy, the heterogeneity and complexity of clinical data, in particular, pose additional challenges for big data inferencing and clinical application. However, the ultimate comparability and consistency of heterogeneous clinical information sources can be enhanced by existing and emerging data standards, which promise to bring order to clinical data chaos. Meaningful Use data standards in particular have already simplified the task of identifying clinical phenotyping patterns in electronic health records.

Hemangioma is associated with atopic disease.

OBJECTIVE: To determine if atopic disease is associated with infantile hemangioma. STUDY DESIGN: Case control study. SETTING: State of Utah inpatient and outpatient records obtained from the Department of Health, Intermountain Healthcare medical records, and the University of Utah Health Care medical records using the Utah Population Database. SUBJECTS: Patients given an International Classification of Diseases, Ninth Revision diagnosis of hemangioma prior to age 5 years, from 1991 to 2009. METHODS: Allergy, asthma, and eczema rates in the hemangioma cohort compared to randomly matched controls using logistic regression analysis. RESULTS: The authors identified 2063 patients in the hemangioma group. The overall odds ratio of atopic disease in patients diagnosed with hemangioma was 1.67 compared to the control group (P < .0001). In the hemangioma cohort, the authors found a 36% increased risk of allergies (P < .0001), 67% increased risk of asthma (P < 4e-12), and 82% increased risk of eczema (P < 2e-16). CONCLUSION: This study indicates that allergy, asthma, and eczema are positively associated with hemangioma. Eczema was most strongly associated with hemangioma, with a nearly 2-fold increased risk. Understanding the relationship between atopic disease and infantile hemangioma may elucidate the pathophysiology of each and ultimately lead to better treatment options.

Development and early usage patterns of a consumer-facing family health history tool.

Personalized medicine will require detailed clinical patient profiles, and a particular focus on capturing data that is useful in forecasting risk. A detailed family health history is considered a critical component of these profiles, insomuch that it has been coined as 'the best genetic test available'. Despite this, tools aimed at capturing this information for use in electronic health records have been characterized as inadequate. In this manuscript we detail the creation of a patient-facing family health history tool known as OurFamilyHealth, whose long-term emphasis is to facilitate risk assessment and clinical decision support. We present the rationale for such a tool, describe its development and release as a component of Intermountain Healthcare's patient portal, and detail early usage statistics surrounding the application. Data derived from the tool since its release are also compared against family history charting patterns in Intermountain's electronic health records, revealing differences in data availability.

Familial clustering of hemangiomas.

OBJECTIVES: To assess the degree of relationship among individuals with hemangiomas and to evaluate the relative risk (RR) for family members of individuals with hemangiomas. DESIGN: Retrospective case-control study. SETTING: Utah Population Database. PARTICIPANTS: Data sets of individuals of different ages with International Classification of Diseases, Ninth Revision (ICD-9) codes for hemangiomas were created from sources having medical records linked to the Utah Population Database. Controls were selected who matched cases for sex, birth year, and birthplace inside vs outside of Utah. Ten controls were selected per case, and sampling was performed without replacement. Kinship analysis tools were used to identify pedigrees having excess individuals with hemangiomas. MAIN OUTCOME MEASURE: Using conditional logistic regression analysis, RR for hemangiomas among several kinship classes was determined. RESULTS: Identified were 2514 distinct cases 12 years or younger with ICD-9 code 228.01, and the RR for sibs in this group was significantly increased (RR, 2.52; P < .001). Seventy-three founder families had 5 or more affected descendants with cluster P values ≤ .01; familial standardized incidence ratios ranged from 1.64 to 9.50. Family sizes ranged from 546 to 22 291 descendants. CONCLUSIONS: Sibs have increased RR for infantile hemangiomas, suggesting a potential genetic contribution to this likely multifactorial disease. Identification of large families with distantly related individuals will be helpful for future shared segment identification analyses.

Deriving consumer-facing disease concepts for family health histories using multi-source sampling.

The family health history has long been recognized as an effective way of understanding individuals' susceptibility to familial disease; yet electronic tools to support the capture and use of these data have been characterized as inadequate. As part of an ongoing effort to build patient-facing tools for entering detailed family health histories, we have compiled a set of concepts specific to familial disease using multi-source sampling. These concepts were abstracted by analyzing family health history data patterns in our enterprise data warehouse, collection patterns of consumer personal health records, analyses from the local state health department, a healthcare data dictionary, and concepts derived from genetic-oriented consumer education materials. Collectively, these sources yielded a set of more than 500 unique disease concepts, represented by more than 2500 synonyms for supporting patients in entering coded family health histories. We expect that these concepts will be useful in providing meaningful data and education resources for patients and providers alike.

Ideal features for a patient-entered family history and risk assessment tool.

Family history (FH) is an important risk factor for many diseases and its assessment can be a powerful tool for identifying and stratifying patients at risk. As part of an initiative to improve FH collection and decision support at Intermountain Healthcare we conducted a literature review on FH data collection and reviewed a number of current Web-based tools. An ideal list of features was produced to help implement goals of the initiative.

Analysis of family health history data collection patterns in consumer-oriented Web-based tools.

Current trends have brought resurgent interest in developing consumer-oriented tools that gather patient-entered clinical data. Family health history data has long been recognized as valuable for risk assessment in primary care, but has gained renewed attention recently as part of IT-oriented efforts in personalized medicine. In order to better understand the breadth of data collected in consumer-oriented web applications, we evaluated their collection patterns using the recommendations issued by the American Health Information Community (AHIC).

Integrating genetic information resources with an EHR.

As the knowledge about the genetic factors associated with clinical conditions increases, access to information that can help practicing clinicians better understand these factors becomes essential for optimal care and communication with patients. We describe the implementation of 'infobuttons' from the problem list module of an electronic health record (EHR) to on-line genetic resources.