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Informed decision-making among students analyzing their personal genomes on a whole genome sequencing course: a longitudinal cohort study.

ABSTRACT: BACKGROUND: Multiple laboratories now offer clinical whole genome sequencing (WGS). We anticipate WGS becoming routinely used in research and clinical practice. Many institutions are exploring how best to educate geneticists and other professionals about WGS. Providing students in WGS courses with the option to analyze their own genome sequence is one strategy that might enhance students' engagement and motivation to learn about personal genomics. However, if this option is presented to students, it is vital they make informed decisions, do not feel pressured into analyzing their own genomes by their course directors or peers, and feel free to analyze a third-party genome if they prefer. We therefore developed a 26-hour introductory genomics course in part to help students make informed decisions about whether to receive personal WGS data in a subsequent advanced genomics course. In the advanced course, they had the option to receive their own personal genome data, or an anonymous genome, at no financial cost to them. Our primary aims were to examine whether students made informed decisions regarding analyzing their personal genomes, and whether there was evidence that the introductory course enabled the students to make a more informed decision. METHODS: This was a longitudinal cohort study in which students (N?=?19) completed questionnaires assessing their intentions, informed decision-making, attitudes and knowledge before (T1) and after (T2) the introductory course, and before the advanced course (T3). Informed decision-making was assessed using the Decisional Conflict Scale. RESULTS: At the start of the introductory course (T1), most (17/19) students intended to receive their personal WGS data in the subsequent course, but many expressed conflict around this decision. Decisional conflict decreased after the introductory course (T2) indicating there was an increase in informed decision-making, and did not change before the advanced course (T3). This suggests that it was the introductory course content rather than simply time passing that had the effect. In the advanced course, all (19/19) students opted to receive their personal WGS data. No changes in technical knowledge of genomics were observed. Overall attitudes towards WGS were broadly positive. CONCLUSIONS: Providing students with intensive introductory education about WGS may help them make informed decisions about whether or not to work with their personal WGS data in an educational setting.

SUBMITTER: Sanderson SC

PROVIDER: S-EPMC3971344 | biostudies-literature | 2013

REPOSITORIES: biostudies-literature

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Informed decision-making among students analyzing their personal genomes on a whole genome sequencing course: a longitudinal cohort study.

Sanderson Saskia C SC Linderman Michael D MD Kasarskis Andrew A Bashir Ali A Diaz George A GA Mahajan Milind C MC Shah Hardik H Wasserstein Melissa M Zinberg Randi E RE Zweig Micol M Schadt Eric E EE

Genome medicine 20131230 12

<h4>Background</h4>Multiple laboratories now offer clinical whole genome sequencing (WGS). We anticipate WGS becoming routinely used in research and clinical practice. Many institutions are exploring how best to educate geneticists and other professionals about WGS. Providing students in WGS courses with the option to analyze their own genome sequence is one strategy that might enhance students' engagement and motivation to learn about personal genomics. However, if this option is presented to s ...[more]

PMID: 24373383

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Project description:BackgroundHealth insurance enrollment is a difficult financial decision with large health impacts. Challenges such as low health insurance literacy and lack of knowledge about choosing a plan further complicate this decision-making process. Therefore, to support consumers in their choice of a health insurance plan, it is essential to understand how individuals go about making this decision.ObjectiveThis study aims to understand the sources of information used by individuals to support their employer-provided health insurance enrollment decisions. It seeks to describe how individual descriptive factors lead to choosing a particular type of information source.MethodsAn introduction was presented on health insurance plan selection and the sources of information used to support these decisions from the 1980s to the present. Subsequently, an electronic survey of 151 full-time faculty and staff members was conducted. The survey consisted of four sections: demographics, sources of information, health insurance literacy, and technology acceptance. Descriptive statistics were used to show the demographic characteristics of the 126 eligible respondents and to study the response behaviors in the remaining survey sections. Proportion data analysis was performed using the Cochran-Armitage trend test to understand the strength of the association between our variables and the types of sources used by the respondents.ResultsIn terms of demographics, most of the respondents were women (103/126, 81.7%), represented a small household (1-2 persons; 87/126, 69%), and used their insurance 3-12 times a year (52/126, 41.3%). They assessed themselves as having moderate to high health insurance literacy and high acceptance of technology. The most selected and top-ranked sources were Official employer or state websites and Official Human Resources Virtual Benefits Counselor Alex. From our data analysis, we found that the use of official primary sources was constant across age groups and health insurance use groups. Meanwhile, the use of friends or family as a primary source slightly decreased as age and use increased.ConclusionsIn this exploratory study, we identified the main sources of health insurance information among full-time employees from a large state university and found that most of the respondents needed 2-3 sources to gather all the information that they desired. We also studied and identified the relationships between individual factors (such as age, gender, and literacy) and 2 dependent variables on the types of primary sources of information. We encountered several limitations, which will be addressed in future studies.

Project description:BackgroundPublic health professionals are increasingly expected to engage in evidence-informed decision making to inform practice and policy decisions. Evidence-informed decision making involves the use of research evidence along with expertise, existing public health resources, knowledge about community health issues, the local context and community, and the political climate. The National Collaborating Centre for Methods and Tools has identified a seven step process for evidence-informed decision making. Tools have been developed to support public health professionals as they work through each of these steps. This paper provides an overview of tools used in three Canadian public health departments involved in a study to develop capacity for evidence-informed decision making.MethodsAs part of a knowledge translation and exchange intervention, a Knowledge Broker worked with public health professionals to identify and apply tools for use with each of the steps of evidence-informed decision making. The Knowledge Broker maintained a reflective journal and interviews were conducted with a purposive sample of decision makers and public health professionals. This paper presents qualitative analysis of the perceived usefulness and usability of the tools.ResultsTools were used in the health departments to assist in: question identification and clarification; searching for the best available research evidence; assessing the research evidence for quality through critical appraisal; deciphering the 'actionable message(s)' from the research evidence; tailoring messages to the local context to ensure their relevance and suitability; deciding whether and planning how to implement research evidence in the local context; and evaluating the effectiveness of implementation efforts. Decision makers provided descriptions of how the tools were used within the health departments and made suggestions for improvement. Overall, the tools were perceived as valuable for advancing and sustaining evidence-informed decision making.ConclusionTools are available to support the process of evidence-informed decision making among public health professionals. The usability and usefulness of these tools for advancing and sustaining evidence-informed decision making are discussed, including recommendations for the tools' application in other public health settings beyond this study. Knowledge and awareness of these tools may assist other health professionals in their efforts to implement evidence-informed practice.

Project description:INTRODUCTION:It is increasingly considered important that people make an autonomous and informed decision concerning colorectal cancer (CRC) screening. However, the realisation of autonomy within the concept of informed decision-making might be interpreted too narrowly. Additionally, relatively little is known about what the eligible population believes to be a 'good' screening decision. Therefore, we aimed to explore how the concepts of autonomous and informed decision-making relate to how the eligible CRC screening population makes their decision and when they believe to have made a 'good' screening decision. METHODS:We conducted 27 semi-structured interviews with the eligible CRC screening population (eighteen CRC screening participants and nine non-participants). The general topics discussed concerned how people made their CRC screening decision, how they experienced making this decision and when they considered they had made a 'good' decision. RESULTS:Most interviewees viewed a 'good' CRC screening decision as one based on both reasoning and feeling/intuition, and that is made freely. However, many CRC screening non-participants experienced a certain social pressure to participate. All CRC screening non-participants viewed making an informed decision as essential. This appeared to be the case to a lesser extent for CRC screening participants. For most, experiences and values were involved in their decision-making. CONCLUSION:Our sample of the eligible CRC screening population viewed aspects related to the concepts of autonomous and informed decision-making as important for making a 'good' CRC screening decision. However, in particular the existence of a social norm may be affecting a true autonomous decision-making process. Additionally, the present concept of informed decision-making with its strong emphasis on making a fully informed and well-considered decision does not appear to be entirely reflective of the process in practice. More efforts could be made to attune to the diverse values and factors that are involved in deciding about CRC screening participation.

Project description:BackgroundThe current state of evidence regarding measures that assess evidence-informed decision-making (EIDM) competence attributes (i.e., knowledge, skills, attitudes/beliefs, behaviours) among nurses is unknown. This systematic review provides a narrative synthesis of the psychometric properties and general characteristics of EIDM competence attribute measures in nursing.MethodsThe search strategy included online databases, hand searches, grey literature, and content experts. To align with the Cochrane Handbook of Systematic Reviews, psychometric outcome data (i.e., acceptability, reliability, validity) were extracted in duplicate, while all remaining data (i.e., study and measure characteristics) were extracted by one team member and checked by a second member for accuracy. Acceptability data was defined as measure completion time and overall rate of missing data. The Standards for Educational and Psychological Testing was used as the guiding framework to define reliability, and validity evidence, identified as a unified concept comprised of four validity sources: content, response process, internal structure and relationships to other variables. A narrative synthesis of measure and study characteristics, and psychometric outcomes is presented across measures and settings.ResultsA total of 5883 citations were screened with 103 studies and 35 unique measures included in the review. Measures were used or tested in acute care (n?=?31 measures), public health (n?=?4 measures), home health (n?=?4 measures), and long-term care (n?=?1 measure). Half of the measures assessed a single competence attribute (n?=?19; 54.3%). Three measures (9%) assessed four competence attributes of knowledge, skills, attitudes/beliefs and behaviours. Regarding acceptability, overall missing data ranged from 1.6-25.6% across 11 measures and completion times ranged from 5 to 25?min (n?=?4 measures). Internal consistency reliability was commonly reported (21 measures), with Cronbach's alphas ranging from 0.45-0.98. Two measures reported four sources of validity evidence, and over half (n?=?19; 54%) reported one source of validity evidence.ConclusionsThis review highlights a gap in the testing and use of competence attribute measures related to evidence-informed decision making in community-based and long-term care settings. Further development of measures is needed conceptually and psychometrically, as most measures assess only a single competence attribute, and lack assessment and evidence of reliability and sources of established validity evidence.RegistrationPROSPERO #CRD42018088754.

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Informed decision-making among students analyzing their personal genomes on a whole genome sequencing course: a longitudinal cohort study.

Publications

Informed decision-making among students analyzing their personal genomes on a whole genome sequencing course: a longitudinal cohort study.

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