Objective:Harmonized data quality (DQ) assessment terms, methods, and reporting practices can establish a common understanding of the strengths and limitations of electronic health record (EHR) data for operational analytics, quality improvement, and research. Existing published DQ terms were harmonized to a comprehensive unified terminology with definitions and examples and organized into a conceptual framework to support a common approach to defining whether EHR data is ‘fit’ for specific uses.Materials and Methods:DQ publications, informatics and analytics experts, managers of established DQ programs, and operational manuals from several mature EHR-based research networks were reviewed to identify potential DQ terms and categories. Two face-to-face stakeholder meetings were used to vet an initial set of DQ terms and definitions that were grouped into an overall conceptual framework. Feedback received from data producers and users was used to construct a draft set of harmonized DQ terms and categories. Multiple rounds of iterative refinement resulted in a set of terms and organizing framework consisting of DQ categories, subcategories, terms, definitions, and examples. The harmonized terminology and logical framework’s inclusiveness was evaluated against ten published DQ terminologies.Results:Existing DQ terms were harmonized and organized into a framework by defining three DQ categories: (1) Conformance (2) Completeness and (3) Plausibility and two DQ assessment contexts: (1) Verification and (2) Validation. Conformance and Plausibility categories were further divided into subcategories. Each category and subcategory was defined with respect to whether the data may be verified with organizational data, or validated against an accepted gold standard, depending on proposed context and uses. The coverage of the harmonized DQ terminology was validated by successfully aligning to multiple published DQ terminologies.Discussion:Existing DQ concepts, community input, and expert review informed the development of a distinct set of terms, organized into categories and subcategories. The resulting DQ terms successfully encompassed a wide range of disparate DQ terminologies. Operational definitions were developed to provide guidance for implementing DQ assessment procedures. The resulting structure is an inclusive DQ framework for standardizing DQ assessment and reporting. While our analysis focused on the DQ issues often found in EHR data, the new terminology may be applicable to a wide range of electronic health data such as administrative, research, and patient-reported data.Conclusion:A consistent, common DQ terminology, organized into a logical framework, is an initial step in enabling data owners and users, patients, and policy makers to evaluate and communicate data quality findings in a well-defined manner with a shared vocabulary. Future work will leverage the framework and terminology to develop reusable data quality assessment and reporting methods.
IMPORTANCE The incidence of human papillomavirus (HPV)-related cancers is more than 35 000 cases in the United States each year. Effective HPV vaccines have been available in the United States for several years but are underused among adolescents, the target population for vaccination. Interventions to increase uptake are needed. OBJECTIVE To evaluate the effect of a 5-component health care professional HPV vaccine communication intervention on adolescent HPV vaccination. DESIGN, SETTING, AND PARTICIPANTS A cluster randomized clinical trial using covariate-constrained randomization to assign study arms and an intent-to-treat protocol was conducted in 16 primary care practices in the Denver, Colorado, metropolitan area. Participants included 188 medical professionals and 43 132 adolescents. INTERVENTIONS The 5 components of the intervention were an HPV fact sheet library to create customized information sheets relevant to each practice's patient population, a tailored parent education website, a set of HPV-related disease images, an HPV vaccine decision aid, and 2½ hours of communication training on using a presumptive vaccine recommendation, followed by motivational interviewing if parents were resistant to vaccination. Each practice participated in a series of 2 intervention development meetings over a 6-month period (August 1, 2014, to January 31, 2015) before the intervention. MAIN OUTCOMES AND MEASURES Differences between control and intervention changes over time (ie, difference in differences between the baseline and intervention period cohorts of patients) in HPV vaccine series initiation (Ն1 dose) and completion (Ն3 doses) among patients aged 11 to 17 years seen at the practices between February 1, 2015, and January 31, 2016. Vaccination data were obtained from the practices' records and augmented with state immunization information system data. RESULTS Sixteen practices and 43 132 patients (50.3% female; median age, 12.6 years [interquartile range, 10.8-14.7 years] at the beginning of the study period) participated in this trial. Adolescents in the intervention practices had significantly higher odds of HPV vaccine series initiation (adjusted odds ratio [aOR], 1.46; 95% CI, 1.31-1.62) and completion (aOR, 1.56; 95% CI, 1.27-1.92) than those in the control practices (a 9.5-absolute percentage point increase in HPV vaccine series initiation and a 4.4-absolute percentage point increase in HPV vaccine series completion in intervention practices). The intervention had a greater effect in pediatric practices compared with family medicine practices and in private practices compared with public ones. Health care professionals reported that communication training and the fact sheets were the most used and useful intervention components. CONCLUSIONS AND RELEVANCE A health care professional communication intervention significantly improved HPV vaccine series initiation and completion among adolescent patients. TRIAL REGISTRATION clinicaltrials.gov Identifier: NCT02456077
Patient materials are often written above the reading level of most adults. Tool 11 of the Health Literacy Universal Precautions Toolkit ("Design Easy-to-Read Material") provides guidance on ensuring that written patient materials are easy to understand. As part of a pragmatic demonstration of the Toolkit, we examined how four primary care practices implemented Tool 11 and whether written materials improved as a result. We conducted interviews to learn about practices' implementation activities and assessed the readability, understandability, and actionability of patient education materials collected during pre-and postimplementation site visits. Interview data indicated that practices followed many action steps recommended in Tool 11, including training staff, assessing readability, and developing or revising materials, typically focusing on brief documents such as patient letters and information sheets. Many of the revised and newly developed documents had reading levels appropriate for most patients and-in the case of revised documents-better readability than the original materials. In contrast, the readability, understandability, and actionability of lengthier patient education materials were poor and did not improve over the 6-month implementation period. Findings guided revisions to Tool 11 and highlighted the importance of engaging multiple stakeholders in improving the quality of patient materials.Address correspondence to Angela G. Brega, Department of Community and Behavioral Health, Colorado School of Public Health, 13055 East 17th Avenue, Mail Stop F800, Aurora, CO 80045, USA. angela.brega@ucdenver.edu. HHS Public AccessAuthor manuscript J Health Commun. Author manuscript; available in PMC 2016 October 28. Author Manuscript Author ManuscriptAuthor Manuscript Author ManuscriptHealth literacy plays a critical role in comprehension of written health-related materials. And yet numerous studies show that the reading level of patient materials often exceeds the reading skills of many adults. It is estimated that the average U.S. adult can comprehend text written at the eighthto ninth-grade level (Doak, Doak, & Root, 1996; Institute of Medicine Committee on Health Literacy, 2004; National Work Group on Literacy and Health, 1998), although literacy skills are substantially lower among older and low-income adults (Doak et al., 1996;Kutner, Greenberg, Jin, & Paulsen, 2006;Weiss et al., 1994). In contrast, patient materials are often written at or above the 10th-grade level (Aliu & Chung, 2010;Helitzer, Hollis, Cotner, & Oestreicher, 2009;Kaphingst, Zanfini, & Emmons, 2006;Vallance, Taylor, & Lavallee, 2008;Wallace, Turner, Ballard, Keenum, & Weiss, 2005). These high reading levels, in addition to other features that can make documents difficult to understand (e.g., the use of medical terms), render many patient materials unusable for millions of Americans.The Agency for Healthcare Research and Quality developed the Health Literacy Universal Precautions Toolkit to support primary care practices in thei...
Past research suggests that environmental factors may be associated with sarcoidosis risk. We conducted a case control study to test a priori hypotheses that environmental and occupational exposures are associated with sarcoidosis. Ten centers recruited 706 newly diagnosed patients with sarcoidosis and an equal number of age-, race-, and sex-matched control subjects. Interviewers administered questionnaires containing questions regarding occupational and nonoccupational exposures that we assessed in univariable and multivariable analyses. We observed positive associations between sarcoidosis and specific occupations (e.g., agricultural employment, odds ratio [OR] 1.46, confidence interval [CI] 1.13-1.89), exposures (e.g., insecticides at work, OR 1.52, CI 1.14-2.04, and work environments with mold/mildew exposures [environments with possible exposures to microbial bioaerosols], OR 1.61, CI 1.13-2.31). A history of ever smoking cigarettes was less frequent among cases than control subjects (OR 0.62, CI 0.50-0.77). In multivariable modeling, we observed elevated ORs for work in areas with musty odors (OR 1.62, CI 1.24-2.11) and with occupational exposure to insecticides (OR 1.61, CI 1.13-2.28), and a decreased OR related to ever smoking cigarettes (OR 0.65, CI 0.51-0.82). The study did not identify a single, predominant cause of sarcoidosis. We identified several exposures associated with sarcoidosis risk, including insecticides, agricultural employment, and microbial bioaerosols.
In this study, we found that exposures in particular occupational settings may contribute to sarcoidosis risk.
The Agency for Healthcare Research and Quality Health Literacy Universal Precautions Toolkit was developed to help primary care practices assess and make changes to improve communication with and support for patients. Twelve diverse primary care practices implemented assigned tools over a 6-month period. Qualitative results revealed challenges practices experienced during implementation, including competing demands, bureaucratic hurdles, technological challenges, limited quality improvement experience, and limited leadership support. Practices used the Toolkit flexibly and recognized the efficiencies of implementing tools in tandem and in coordination with other quality improvement initiatives. Practices recommended reducing Toolkit density and making specific refinements.
Despite reports of familial clustering of sarcoidosis, little empirical evidence exists that disease risk in family members of sarcoidosis cases is greater than that in the general population. To address this question, we estimated sarcoidosis familial relative risk using data on disease occurrence in 10,862 first- and 17,047 second-degree relatives of 706 age, sex, race, and geographically matched cases and controls who participated in the multicenter ACCESS (A Case-Control Etiology Study of Sarcoidosis) study from 1996 to 1999. Familial relative risk estimates were calculated using a logistic regression technique that accounted for the dependence between relatives. Sibs had the highest relative risk (odds ratio [OR] = 5.8; 95% confidence interval [CI] = 2.1-15.9), followed by avuncular relationships (OR = 5.7; 95% CI = 1.6-20.7), grandparents (OR = 5.2; 95% CI = 1.5-18.0), and then parents (OR = 3.8; 95% CI = 1.2-11.3). In a multivariate model fit to the parents and sibs data, the familial relative risk adjusted for age, sex, relative class, and shared environment was 4.7 (95% CI = 2.3-9.7). White cases had a markedly higher familial relative risk compared with African-American cases (18.0 versus 2.8; p = 0.098). In summary, a significant elevated risk of sarcoidosis was observed among first- and second-degree relatives of sarcoidosis cases compared with relatives of matched control subjects.
OBJECTIVE: School-based health centers (SBHCs) have been suggested as possible patient-centered medical homes. Our objectives were to determine, in a low-income, urban population, adolescents’ reasons for visiting SBHCs and the value parents place on SBHC services, and adolescents’ and parents’ assessment of how well SBHCs fulfill criteria for a medical home as defined by the American Academy of Pediatrics. METHODS: A cross-sectional, mailed survey of a random sample of 495 adolescent SBHC users and 497 parents of SBHC users from 10 SBHCs in Denver, CO from May to October 2012. Eligible adolescents were registered in an SBHC with ≥1 visit during the 2011 to 2012 school year. RESULTS: Response rates were 40% (198/495) among adolescents and 36% (181/497) among parents. The top 3 reasons for visits were for illness (78%), vaccines (69%), and sexual health education (63%). Factors reported as very important by >75% of parents in the decision to enroll their adolescent in an SBHC included clinic offering sick or injury visits, sports physicals, and vaccinations. More than 70% of adolescents gave favorable responses (always or usually, excellent or good) to questions about American Academy of Pediatrics medical home criteria (accessibility, continuity, comprehensiveness, family-centeredness, coordination, and compassion). Most parents (83%) reported that they could always or usually trust the SBHC provider to take good care of their child; 82% were satisfied with provider-to-provider communication. CONCLUSIONS: In a low-income urban population, SBHCs met criteria of a medical home from adolescents’ and parents’ perspectives. Policymakers and communities should recognize that SBHCs play an important role in the medical community, especially for underserved adolescents.
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