scholarly journals Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?

2018 ◽  
Vol 13 (2) ◽  
pp. 125-138 ◽  
Author(s):  
Phoebe B. Mitchell ◽  
Sonja I. Ziniel ◽  
Sarah K. Savage ◽  
Kurt D. Christensen ◽  
Elissa R. Weitzman ◽  
...  
Keyword(s):  
Genetic Information ◽  
Pediatric Patients ◽  
Good Thing ◽  
Return Of Results ◽  
Research Results ◽  
Biobank Research ◽  
Perceived Benefit ◽  
Individual Research Results ◽  
To Receive ◽  
The Relationship

The opportunity to receive individual research results (IRRs) in accordance with personal preferences may incentivize biobank participation and maximize perceived benefit. This trial investigated the relationship between parents’ preferences and intent to participate (ITP) in biobank research utilizing their child’s genetic information. We randomized parents of pediatric patients to four hypothetical biobanks, one of which employed a preference-setting model for return of results regarding their child. ITP was highest among those desiring all types of IRRs (93.3%) and decreased as participants became increasingly selective with their preferences ( p < .0001). We demonstrated that most parents would participate in a biobank that allows for preference setting; however, those who set preferences to receive a narrower set of IRRs are less likely to participate.

scholarly journals Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions (Preprint)

2017 ◽  
Author(s):  
Sara Huston Katsanis ◽  
Mollie A Minear ◽  
Azita Sadeghpour ◽  
Heidi Cope ◽  
Yezmin Perilla ◽  
...  
Keyword(s):  
Genetic Information ◽  
Research Team ◽  
Research Study ◽  
Genetic Research ◽  
Genomic Research ◽  
Active Engagement ◽  
Medical Conditions ◽  
Relevant Research ◽  
Research Results ◽  
To Receive

BACKGROUND Unlike aggregate research on groups of participants with a particular disorder, genomic research on discrete families’ rare conditions could result in data of use to families, their healthcare, as well as generating knowledge on the human genome. OBJECTIVE In a study of families seeking to rule in/out genetic causes for their children’s medical conditions via exome sequencing, we solicited their views on the importance of genomic information. Our aim was to learn the interests of parents in seeking genomic research data and to gauge their responsiveness and engagement with the research team. METHODS At enrollment, we offered participants options in the consent form for receiving potentially clinically relevant research results. We also offered an option of being a “partner” versus a “traditional” participant; partners could be re-contacted for research and study activities. We invited adult partners to complete a pre-exome survey, attend annual family forums, and participate in other inter-family interaction opportunities. RESULTS Of the 385 adults enrolled, 79% opted for “partnership” with the research team. Nearly all (99.2%) participants opted to receive research results pertaining to their children’s primary conditions. A majority indicated the desire to receive additional clinically relevant outside the scope of their children’s conditions (92.7%) and an interest in non-clinically relevant genetic information (82.7%). CONCLUSIONS Most participants chose partnership, including its rights and potential burdens; however, active engagement in study activities remained the exception. Not surprisingly, the overwhelming majority of participants—both partners and traditional—expected to receive all genetic information resulting from the research study.

scholarly journals Return of individual research results: What do participants prefer and expect?

PLoS ONE ◽  
2021 ◽  
Vol 16 (7) ◽  
pp. e0254153
Author(s):  
Sabina Sayeed ◽  
Robert Califf ◽  
Robert Green ◽  
Celeste Wong ◽  
Kenneth Mahaffey ◽  
...  
Keyword(s):  
Online Survey ◽  
Disease Risk ◽  
Health Study ◽  
Return Of Results ◽  
Sociodemographic Characteristics ◽  
Data Types ◽  
Cross Sectional ◽  
Research Results ◽  
Individual Research Results ◽  
Genetic Results

Newer data platforms offer increased opportunity to share multidimensional health data with research participants, but the preferences of participants for which data to receive and how is evolving. Our objective is to describe the preferences and expectations of participants for the return of individual research results within Project Baseline Health Study (PBHS). The PBHS is an ongoing, multicenter, longitudinal cohort study with data from four initial enrollment sites. PBHS participants are recruited from the general population along with groups enriched for heart disease and cancer disease risk. Cross-sectional data on return of results were collected in 2017–2018 from an (1) in-person enrollment survey (n = 1,890), (2) benchmark online survey (n = 1,059), and (3) participant interviews (n = 21). The main outcomes included (1) preferences for type of information to be added next to returned results, (2) participant plans for sharing returned results with a non-study clinician, and (3) choice to opt-out of receiving genetic results. Results were compared by sociodemographic characteristics. Enrollment and benchmark survey respondents were 57.1% and 53.5% female, and 60.0% and 66.2% white, respectively. Participants preferred the following data types be added to returned results in the future: genetics (29.9%), heart imaging, (16.4%), study watch (15.8%), and microbiome (13.3%). Older adults (OR 0.60, 95% CI: 0.41–0.87) were less likely to want their genetic results returned next. Forty percent of participants reported that they would not share all returned results with their non–study clinicians. Black (OR 0.64, 95% CI 0.43–0.95) and Asian (OR 0.47, 95% CI 0.30–0.73) participants were less likely, and older participants more likely (OR 1.45–1.61), to plan to share all results with their clinician than their counterparts. At enrollment, 5.8% of participants opted out of receiving their genetics results. The study showed that substantial heterogeneity existed in participant’s preferences and expectations for return of results, and variations were related to sociodemographic characteristics.

Academic motivation and professional skills development in the Specialty of Social Sciences and Tourism at a public university [Motivación académica y desarrollo de competencias profesionales en la Especialidad de Ciencias Sociales y Turismo de una universidad pública]

2019 ◽  
Vol 1 (2) ◽  
pp. 96
Author(s):  
Ana Cecilia De Paz Lazaro ◽  
Jessica Luz Palomino Collantes
Keyword(s):  
Social Sciences ◽  
Academic Motivation ◽  
Public University ◽  
Skills Development ◽  
Professional Skills ◽  
Research Results ◽  
Competencias Profesionales ◽  
High Level ◽  
The Relationship

The objective of the research is to determine the relationship between academic motivation and the professional skills development in the specialty of Social Sciences and Tourism. The study is quantitative and the design is non-experimental correlational translational. The results indicate that there is a high level relationship (0.914) between the independent academic motivation variable and the professional competences development in the Specialty of Social Sciences and Tourism. In conclusion, motivation is directly related to the professional skills development in the specialty of Social Sciences and Tourism. The research results conclude that there is a high relationship between the variables.

Grading Teachers: Race and Gender Differences in Low Evaluation Ratings and Teacher Employment Outcomes

2019 ◽  
Vol 56 (5) ◽  
pp. 1800-1833 ◽  
Author(s):  
Steven Drake ◽  
Amy Auletto ◽  
Joshua M. Cowen
Keyword(s):  
Charter Schools ◽  
Evaluation System ◽  
Employment Outcomes ◽  
Teachers Of Color ◽  
High Stakes ◽  
Teacher Labor Market ◽  
Race And Gender ◽  
And Gender ◽  
To Receive ◽  
The Relationship

In July 2011, the State of Michigan adopted a broad set of teacher labor market reforms, including a high-stakes evaluation system designed in part to remove low-performing teachers. We examine the characteristics of teachers rated as “minimally effective” and “ineffective,” as well as their schools, and the relationship between low effectiveness ratings and later employment outcomes. Results suggest teachers of color across traditional and charter schools are more likely to receive low effectiveness ratings than their within-school peers. These low rating risks are higher for teachers of color working in comparatively White-faculty contexts. Male and novice teachers are also rated low more frequently, and important differences appear to exist in the usage of low ratings by traditional public and charter schools.

scholarly journals Solutions for Unexpected Challenges Encountered when Integrating Research Genomics Results into the EHR

ACI Open ◽  
2020 ◽  
Vol 04 (02) ◽  
pp. e132-e135
Author(s):  
Luke V. Rasmussen ◽  
Christin Hoell ◽  
Maureen E. Smith ◽  
Rex Chisholm ◽  
Justin Starren ◽  
...  
Keyword(s):  
Genetic Research ◽  
Lessons Learned ◽  
Return Of Results ◽  
Patient Portal ◽  
Test Results ◽  
Research Results ◽  
Genetic Test Results ◽  
Future Return ◽  
New Research ◽  
Genetic Results

Abstract Background While there have been published reports detailing technical challenges of incorporating genetic test results into the electronic health record (EHR) with proposed solutions, less has been published about unanticipated sociotechnological or practical communication challenges involved in this process. Objectives This study was aimed to describe unanticipated issues that arose returning genetic research results through the EHR as part of the National Human Genome Research Institute (NHGRI)-funded electronic Medical Records and Genomics (eMERGE) 3 consortium, and provide lessons learned for future implementations Methods We sequenced 3,000 participants on a 109-gene panel and returned genetic results initially in person and/or by letter, with a later release directly into the EHR and patient portal. Results When results were returned through the EHR, multiple participants expressed confusion and contacted the health system, resulting in our institution temporarily freezing our return of research results. Discussion We determined the likely causes of this issue to be (1) the delay between enrollment and results return, (2) inability to personalize mass e-mail messages announcing new research test results in the EHR, (3) limited space for description of test results in the EHR, and (4) the requirement to list an ordering physician for research results in the EHR. For future return of results, we propose sending preparatory e-mails to participants, including screenshots of how they can expect to see their results presented in the EHR portal. Conclusion We hope our lessons learned can provide helpful guidance to other sites implementing research genetic results into the EHR and can encourage EHR developers to incorporate greater flexibility in the future.

scholarly journals 1339. Antibiotic Prescribing Varies among Patients with a Documented Penicillin or Cephalosporin Adverse Drug Reaction

2020 ◽  
Vol 7 (Supplement_1) ◽  
pp. S681-S681
Author(s):  
Brian R Lee ◽  
Jason Newland ◽  
Jennifer Goldman
Keyword(s):  
Pediatric Patients ◽  
Antibiotic Prescribing ◽  
Hospitalized Children ◽  
Beta Lactam ◽  
Research Support ◽  
Point Prevalence Study ◽  
History Of ◽  
Gi Infections ◽  
To Receive ◽  
Indication For Treatment

Abstract Background Studies have shown that over half of hospitalized children receive an antibiotic during their encounter, of which between 30-50% is considered inappropriate. Antibiotic prescribing is further complicated as approximately 10% of children are labeled beta-lactam allergic, resulting in the use of either broad-spectrum or suboptimal therapy. The purpose of this study was to compare antibiotic prescribing between patients with a documented ADR vs. those without using a nationwide sample of hospitalized children. Methods We performed a point prevalence study among 32 hospitals between July 2016-December 2017 where data were collected via chart review on pediatric patient and antimicrobial characteristics, including the indication for all antimicrobials. In additional, ADR history data were collected on which antimicrobial(s) were documented (e.g., penicillin, cephalosporins). Patients were mutually assigned into either: 1) no documented ADR; 2) penicillin ADR-only; 3) cephalosporin ADR-only; and 4) ADR for both penicillin and cephalosporin. The distribution of antibiotics were compared between the ADR groups, stratified by the indication for treatment. Results A total of 12,250 pediatric patients (17,929 antibiotic orders) who were actively receiving antibiotics were identified. A history of penicillin and cephalosporin ADR was documented in 5.5% and 2.8% of these patients, respectively. When compared to patients with no documented ADR, penicillin ADR patients were more likely to receive a fluoroquinolone for a SSTI infection (odds ratio [OR]: 5.6), surgical prophylaxis (OR: 18.8) or for surgical treatment (OR: 5.2) (see Figure). Conversely, penicillin ADR patients were less likely to receive first-line agents, such as narrow-spectrum penicillin for bacterial LRTI (OR: 0.08) and piperacillin/tazobactam for GI infections (OR: 0.22). Cephalosporin ADR patients exhibited similar patterns with increased use of carbapenems and fluoroquinolones when compared to patients with no ADR. Figure 1: Odds of Receiving Select Antimicrobials Among PCN ADR Patients When Compared to Non-ADR patients, by Indication Conclusion A large, nationwide sample of pediatric patients who were actively prescribed antibiotics helped identify several diagnoses where comprehensive guidelines for appropriate ADR prescribing and increased ADR de-labeling initiatives are needed to ensure optimal treatment. Disclosures Brian R. Lee, MPH, PhD, Merck (Grant/Research Support) Jason Newland, MD, MEd, FPIDS, Merck (Grant/Research Support)Pfizer (Other Financial or Material Support, Industry funded clinical trial)

Effectiveness of Computer-Generated Appointment Reminders

PEDIATRICS ◽  
1991 ◽  
Vol 88 (4) ◽  
pp. 801-805 ◽  
Author(s):  
Thomas G. Quattlebaum ◽  
Paul M. Darden ◽  
John B. Sperry
Keyword(s):  
Block Scheduling ◽  
Pediatric Patients ◽  
Cost Effective ◽  
Control Group ◽  
Low Socioeconomic ◽  
Socioeconomic Groups ◽  
Patient Demographics ◽  
If Current ◽  
Appointment Time ◽  
To Receive

Previous studies of appointment reminders among general pediatric patients have been done exclusively among low socioeconomic populations in clinics with low continuity of care and using block scheduling methods. This study of mailed computer-generated appointment reminders took place in a setting with patient demographics and practice techniques similar to those of many private pediatric practices. During a 6-month period, 901 appointments that were made more than 7 days prior to the scheduled date were randomly assigned to receive reminder postcards or to serve as controls. The overall broken appointment (no-show) rate was reduced from 19% in the control group to 10% in the reminder group, representing a 48% reduction (P = .0002). The magnitude of reduction of no-shows was similar for appointments scheduled more than 14 days prior to the appointment time (39%) as well as those scheduled more recently (58%). Equivalent results were seen with well-child appointments (47%) as with other visits (50%). Both lower and higher socioeconomic groups demonstrated similar results. The mailed postcards cost $0.20 each and were highly cost effective, generating an estimated $7.50 for each $1 spent during the study. With reductions similar to those found in this study, computer-generated appointment reminders are likely to be cost effective in other practices if current no-show rates are greater than 2% to 4%.

PRAGMATIC CHARACTERISTICS OF HUMOROUS APHORISMS IN THE CONTEXT OF LIFE SPACE

2020 ◽  
Vol 76 (4) ◽  
pp. 18-23
Author(s):  
LARISA V. Burmistrova ◽  
Keyword(s):  
Positive Attitude ◽  
Negative Attitude ◽  
The Internet ◽  
Study Guide ◽  
Life Space ◽  
Research Results ◽  
The Relationship

The analysis of pragmatic characteristics of humorous aphorisms in the context of life space. Author's humorous aphorisms of famous writers, poets, historians of the 17th, 18th, 19th centuries and modern humorous aphorisms posted on the Internet; collection of sayings, quotes and aphorisms “Big Book of Wisdom” (edited by Yuri Lavrov). The relevance of the research is determined by the interest in comic universal expressions, network discourse, comical texts. The research results are applicable when compiling a study guide for students or can be used to compile a psychological portrait of the hero of the work. The aim of the present study is to investigate the pragmatic characteristics of humorous aphorisms. It is analyzed that humorous aphorisms of famous writers, poets, historians of the 17th, 18th, 19th centuries and modern humorous aphorisms affect the main aspects of life. Pragmatic characteristics of humorous aphorisms are analyzed. It was found that the humorous aphorisms most vividly reflect the relationship and love between a man and a woman, the intellect of a woman and a man, care of women, the image of a strong, ambitious man, relationships in marriage, feelings (love and happiness), positive attitude (purposefulness, necessity of education), negative attitude (duplicity, laziness, stupidity, slight knowledge, exaggeration of material value), the contrary opinion of an optimist and a pessimist.

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