10 results
290 Are you trust-worthy: Trust-building activities in Translational Sciences
- Part of
- Emma Tumilty, Cara Pennel, Krista Bohn, Claire Cynthia Hallmark, Sharon Croisant
-
- Journal:
- Journal of Clinical and Translational Science / Volume 8 / Issue s1 / April 2024
- Published online by Cambridge University Press:
- 03 April 2024, p. 89
-
- Article
-
- You have access Access
- Open access
- Export citation
-
OBJECTIVES/GOALS: Many researchers aim to build trust with communities and participants. Trust building is meant to achieve greater representation across aspects of research whether in participation, or more comprehensively as partners from design to dissemination. We provide practical guidance for trust building activities and the ethical issues that can arise. METHODS/STUDY POPULATION: While trust itself is inherently seen as an ethical good, often little attention is paid to the ethical aspects of trust building exercises themselves and the fact that trust can vary in type. Using a bioethical analysis of trustworthiness, we discuss how to approach trust in different relationships and settings. Explicit communication about the supports/constraints and potential outcomes of new trusted relationships is required for ethical practice. Where relationships are built without appropriate transparency and follow through, or with misunderstandings about potential shared values, priorities, or desired outcomes, significant harms can occur in the short- and long term. Using a bioethical framework and practical examples we provide guidance on how to engage in ethical trust building activities. RESULTS/ANTICIPATED RESULTS: While many people are good at the trust building work they do, this work is often not shared as best practices and is ascribed to individual skill. This is slowly changing and an evidence-base is being developed that can support those new to these activities. Ethical guidance to support trust building practices, especially for those new to these activities, is currently lacking. By providing both a conceptual and normative bioethical analysis grounded in practice, we provide the foundations for new activities and the necessary support for work that explores and determines best practices. This analysis provides an understanding of trust including a taxonomy and a discussion of how different types of trust can be built and can support research activities, as well as problems that can arise. DISCUSSION/SIGNIFICANCE: Trust building activities with communities and participants are crucial to much of translational science and research, but ethical guidance on how to engage in these activities well is lacking. We provide bioethical guidance and offer practical recommendations.
150 Envisioning a Multi-Site Translational Studio to Promote Scientific Integrity and Ethical Innovation
- Part of
- Emma Tumilty, Elise Smith, Alison Zill, Veronica Ajewole, Omonike A. Olaleye, Ivy Poon, Mary Short, Kathy Vincent
-
- Journal:
- Journal of Clinical and Translational Science / Volume 8 / Issue s1 / April 2024
- Published online by Cambridge University Press:
- 03 April 2024, p. 45
-
- Article
-
- You have access Access
- Open access
- Export citation
-
OBJECTIVES/GOALS: The goal of this study is to develop a multi-centered Translational Studio model that can help in the development of quality translational studies using resources from four different institutional partners (University of Texas Medical Branch, Texas Southern University, University of Houston Clear Lake and Houston Methodist). METHODS/STUDY POPULATION: We conducted two rounds of four Futures Workshops for a total participation of 28 stakeholders from four different partners. Future Workshops were used to critique, envision, and articulate novel “futures” that can be achieved at least partly through design practices (Muller, 2002). In the first round of workshops, we asked participants about their institutions’ strengths, weaknesses, resources and investigator needs regarding the Studio. In the second round we asked about different studio models, pros and cons of each model and guiding principles for a studio. Alongside a pragmatic content analysis, multi-stage deductive and inductive qualitative analyses were used to understand people’s views on the future of a multi-institutional Clinical Trials Studio. RESULTS/ANTICIPATED RESULTS: The first-round workshops’ analysis described peoples’ goals for what the studio should be. The future desired studio was described as guide, matchmaker, initiator and advocate. The second-round workshops’ analysis discussed the pros and cons of a variety of possible models including, centralized, decentralized, and topic-specific (and allowed other suggestions) while also describing principles for the guidance of a studio. Here the analysis showed people wanted certain characteristics for the studio (i.e. effective, efficient, locally-responsive, consistent, etc.). They also prescribed four principles that a studio should be guided by: non-hierarchical partnership, user-centeredness, respect/collegiality, and sharing. DISCUSSION/SIGNIFICANCE: The future workshops were useful in developing a shared multi-institutional Clinical Trials Studio model that is planned to be deployed in 2025. Participants valued a studio that was both directly supportive to participants and played a role in creating or advocating for institutional resources and policy for research.
285 “Stages” of Hope: Theater as a Research and Outreach Modality for Generating Knowledge, Understanding, and Healing
- Part of
- Sharon Croisant, Krista Bohn, Leslie Gauna, Lance Hallberg, C. Claire Hallmark, Adrian Juarez, Monique Pappadis, Emma Tumilty, Ramiro Salas, Randall M. Urban
-
- Journal:
- Journal of Clinical and Translational Science / Volume 8 / Issue s1 / April 2024
- Published online by Cambridge University Press:
- 03 April 2024, p. 87
-
- Article
-
- You have access Access
- Open access
- Export citation
-
OBJECTIVES/GOALS: Theater has always served as a means of reflecting and understanding the human condition. Participatory theater further offers the option for viewers to participate in and thus additionally benefit from the performance itself. We use Playback Theater for outreach and research, eliciting information to guide research, education, and engagement. METHODS/STUDY POPULATION: Playback Theater is a type of improvisation that involves audience members recounting personal experiences which are then enacted by a theater troupe. Playback has evolved to include storytelling as a means of expressing and understanding difficult life experiences such as violence, bullying, incarceration, disaster, illness, etc. While not intended as therapy, it has been found to provoke insight and catharsis when used by trained practitioners. We are conducting Playback theater with LGBTQ+ and African American women to elucidate health disparities related to HIV/AIDS. Black/African Americans accounted for 42.1% of cases in 2019, and African American females are 15 times more likely to develop AIDS than white females. We hope to elucidate barriers to screening and treatment to inform early intervention. RESULTS/ANTICIPATED RESULTS: In community engagement, we employ a variety of strategies involving storytelling, since this simple act fosters multiple positive outcomes. For example, by talking about their experiences participants might find clarity about a difficult experience, facilitating coping or healing, or even letting go. By sharing their stories, others (clinicians, researchers, other patients, or the public) can learn what it is like to go through a particular illness or event. This knowledge can be used to allay patient fears or help researchers or clinicians to develop programming that better responds to needs. This novel approach to knowledge sharing also allows communication that may not otherwise be possible. Discussions about sensitive topics are enabled, often leading to shared understanding and potential solutions. DISCUSSION/SIGNIFICANCE: Through Playback Theater, we hope to identify and thus be able to address barriers to early screening and treatment for African American women and the LGBTQ+ population. We are also planning an event with children with cancer and their families to better understand their experiences and needs in both the clinical and familial settings.
104 Perceived Barriers to the Recruitment and Retention of Underrepresented Racial and Ethnic Groups (URGs) in Clinical Research
- Part of
- Victoria McNamara, Elise Smith, Emma Tumilty
-
- Journal:
- Journal of Clinical and Translational Science / Volume 8 / Issue s1 / April 2024
- Published online by Cambridge University Press:
- 03 April 2024, p. 29
-
- Article
-
- You have access Access
- Open access
- Export citation
-
OBJECTIVES/GOALS: The inclusion of underrepresented racial and ethnic groups (URGs) in clinical research is critical for ethical and scientific reasons. This initiative aimed to assess the perspectives, barriers, needs, and recommendations encountered by research teams when enrolling and retaining URGs in clinical research. METHODS/STUDY POPULATION: An anonymous, web-based survey comprised of quantitative and qualitative questions was administered to individuals involved in clinical research at an academic medical center. The survey assessed three main domains: 1. Research teams' perceptions and experiences with enrolling URGs in clinical research, 2. Factors that discourage URGs from participating in clinical research, and 3. Research teams’ overall willingness to support URG enrollment. Demographics were also collected. The survey was reviewed by experts in clinical research, research ethics, and diversity, equity, inclusion, and accessibility (DEIA). The assessment was piloted among research professionals and edits were made accordingly prior to official dissemination. Data were analyzed using descriptive statistics. RESULTS/ANTICIPATED RESULTS: There was a total of 63 responses. A majority of respondents have more success enrolling patients whose primary language is the same as their own and that time arranging for an interpreter has negatively impacted enrollment efforts. Approximately half of the respondents believe that the race and/or ethnicity of the potential study participant influences enrollment success. Factors discouraging URGs from participating in clinical research include unavailability for follow-up visits due to transportation issues, distrust in doctors and/or researchers, fear of unknown side effects, and unavailability of medical interpreters. Respondents report that they are not discouraged from enrolling URGs and would utilize resources related to encouraging the inclusion of URGs DISCUSSION/SIGNIFICANCE: Language appears more influential than ethnicity or race when it comes to enrolling and retaining URGs. Additionally, it appears that enrolling is a bigger challenge than retaining. Major themes that emerge with respect to retaining enrolled participants include the inability to attend follow-up visits and the lack of incentives/compensation.
81 The Social Responsibility of Translational Science
- Part of
- Elise Smith, Stephen Molldrem, Galveston Jeffrey S. Farroni, Galveston Emma Tumilty
-
- Journal:
- Journal of Clinical and Translational Science / Volume 7 / Issue s1 / April 2023
- Published online by Cambridge University Press:
- 24 April 2023, pp. 22-23
-
- Article
-
- You have access Access
- Open access
- Export citation
-
OBJECTIVES/GOALS: Recent NCATS funding announcements emphasize pursuing domain-agnostic translational science projects that seek to transform the system of science. We aimed to articulate the social responsibility of translational science, defined as prioritizing improved health outcomes and decreased disparities. METHODS/STUDY POPULATION: We focused on the framing of social responsibilities of translational science and distinctions between (a) domain-agnostic translational science that aims to transform the system of science and (b) translational research that takes place within a specific therapeutic area. We reviewed CTSA funding calls, translational research ethics papers, and statements by leaders in the field of translational science. We integrated the social responsibilities of improving health outcomes and decreasing disparities with the values of translational science, which prioritize the relevance, usability, and sustainability of translational interventions. RESULTS/ANTICIPATED RESULTS: We drew on our review of the literature and case studies to offer guidance aimed at helping to ensure that differently positioned actors and entities within the translational ecology can advance the values of translational science while also fulfilling the social responsibilities of translational science. We specify how (a) Funders and policymaking institutions, (b) Organizations such as research universities and CTSA institutes, (c) Translational health science teams working on innovative translational science projects, and (d) Individual translational scientists can all contribute to ensuring that translational science fulfills its ethical obligations and social responsibilities. DISCUSSION/SIGNIFICANCE: The social responsibility of translational science can be fulfilled by centering its efforts to develop useful, sustainable, and relevant innovations. These criteria clarify how social responsibilities manifest in practice and can help funders shape and guide the next era of translational discovery.
4160 Evaluating Student Team Dynamics
- Celia Chao, Emma Tumilty, Celia Chao, Judith Aronson, Jonathan D. Hommel, Mark R. Hellmich
-
- Journal:
- Journal of Clinical and Translational Science / Volume 4 / Issue s1 / June 2020
- Published online by Cambridge University Press:
- 29 July 2020, p. 61
-
- Article
-
- You have access Access
- Open access
- Export citation
-
OBJECTIVES/GOALS: We aimed to explore the students’ assessments of workload distribution by comparing personal reflective commentaries and team documents defining division of labor in a team science setting. METHODS/STUDY POPULATION: The Interprofessional Research Design course models the team science experience by bringing together MD and PhD students to write a research grant. Four teams of 13 students were tasked with both individual and team-based assignments: 1) Each week, each student reported their perception of their own and their team members’ effort over the week (totalling 100%). 2) Iterative work contracts for each team were submitted at four time-points; assigned work toward project completion totalled 100%. 3) Lastly, each student submitted a short commentary reflecting on the prior week’s team dynamics and teamwork. We retrospectively performed a mixed-methods analysis of the workload data. RESULTS/ANTICIPATED RESULTS: Group-reporting in the team contracts remained static throughout the course, often stating equal distribution of workload, whereas individual reporting was more dynamic. Of 13 students, 8 rated more than 50% of the weeks as balanced. Among some students, there was a discordance of workload distribution when comparing the group document to the individual perceptions of work performed by their teammates. Reflective writing mapped more closely to individual quantitative reports. The data also revealed within team variations, where one student may report a higher proportion of their contributions, while the rest of the team attributed that student a lower percentage of the total work. DISCUSSION/SIGNIFICANCE OF IMPACT: An important aspect of team function is workload distribution. Group-based workload discussions may be a useful framework, but does not provide insight into team dynamics, whereas individually reported workload distributions and short reflections seem to more accurately inform us on team function.
4453 Public Health Ethics: Utilizing open education methods to foster interprofessional learning and practices
- Jeffrey S Farroni, Emma Tumilty
-
- Journal:
- Journal of Clinical and Translational Science / Volume 4 / Issue s1 / June 2020
- Published online by Cambridge University Press:
- 29 July 2020, p. 65
-
- Article
-
- You have access Access
- Open access
- Export citation
-
OBJECTIVES/GOALS: Innovative educational approaches and training modalities are important for training a diverse workforce in the authentic skills needed to advance all phases of clinical and translational research. Endeavors to study and develop policies that promote the translational science spectrum are steeped in value judgments. Learning how to navigate moral ambiguity and ethical reasoning enlightens our understanding of stakeholder obligations, roles and responsibilities. Ethics education can be challenging if learners are insufficiently engaged in the necessary critical reflection. In this course, decision-making in public health is informed through the analysis of the ethical issues, developing alternative courses of action and providing justification for actions taken in response to real-world dilemmas. The course is provided to students with a variety of backgrounds (science, health, policy) in a Master of Public Health degree program. Course objective were to: 1) Identify ethical issues in public health policy, practice, and research using appropriate concepts and terms; 2) Recognize the full spectrum of determinants of health and related information needed to resolve ethical conflicts in public health policy, practice, and research; 3) Present varied and complex information in written and oral formats; 4) Assess potential solutions to ethical conflicts in public health policy, practice, and research and 5) Decide ethical courses of action for public health policy, practice, and research. We adopted an open pedagogy as a guiding praxis to inform public health ethics discourse amongst our learners. In this way, learner agency was maximized to develop course materials within a generalized framework and shared with each other through the perspectives of each individual. The goal was to not only analyze complex ethical dimensions of public health issues but also gain insights into the disciplinary lenses of one’s peers. METHODS/STUDY POPULATION: Each week was divided into two sessions, a seminar and workshop. Course instructors introduce topics in a one-hour session and then allow students to decide what information is needed for a second session where the ethical issues of the topic will be discussed. Information-gathering tasks are then distributed amongst students in areas that are not their specialty, e.g. social history to be researched by learner with a biology background. The second session then involves the reporting back of background information by each student and a discussion of the ethical issues that arise. Through this process, the ability to communicate with others in different disciplines is supported, while exploring other disciplines and then engaging in ethical discussion and reasoning. Topics were introduced during the seminar session each week over the span of five weeks: 1) global public health, 2) disease prevention & control, 3) environmental & occupational public health, 4) resource allocation & priority setting and 5) research ethics. Learners were tasked with identifying the needed information to address the ethical, policy, and research aspects of the public health question(s) presented in these seminars. Students independently submitted resources they discovered to course instructors prior to the workshop. The following session began with a workshop where learners briefly presented their findings and deliberated on specific facets of the public health issue from that previous seminar while discussing a specific case. Students were assessed on their preparation (submission of identified resources), workshop presentation and participation. Research Preparation: In each seminar, the class decided what key information would be required to support the discussion at the workshop, which revolved around a relevant case study on that week’s topic. Course instructors facilitated the groups identification of material to be researched and the delegation of tasks within the group. Each student submitted a summary document (template provided) to course instructors prior to class for their area of research related to the case. Research Presentation: At the beginning of each workshop, each student was asked to present the research work to the rest of the class so that everyone has the same information for the case study discussion. These short (5-10 minutes) presentations followed the format of the preparation summary. Participation/collaboration: Both the seminar and the workshop asked students to be active learners within the class, participating in discussion, strategizing for information-gathering tasks, presenting researched material and arguments to others, and participating in case study discussion. Participation was assessed in relation to the value of the contributions made by students. RESULTS/ANTICIPATED RESULTS: The open pedagogy allowed the learners to construct the necessary materials to discuss issues with each other and develop not only a deeper understanding of the ethical dimension of public health issues but a shared understanding of each other’s disciplinary lenses. Course feedback was generally very positive, with learners either agreeing (33%) or strongly agreeing (67%) that the course was effective overall. In asking what learners liked best about the course, some indicated the “open pedagogy learning style” and “I liked the discussion format.” The positive comments mostly highlighted the discussion format. Areas for improvement noted by the learners included wanting “a longer course to cover more topics” and that the material was covered in “too short a time frame.” Other comments included that the course “was a bit disorganized” or that “the discussions were not very structured.” While the discussions by their very nature were unstructured, there is opportunity to refine this pedagogy to find right balance of learner agency. DISCUSSION/SIGNIFICANCE OF IMPACT: The goal of this teaching method was to empower the learner with the important critical thinking skills to navigate challenging ethical dilemmas in public health they may encounter in their careers. These skills include the identification of the ethical or moral conflict(s), collecting the necessary information to examine/resolve the dilemma, think creatively about the information that is unavailable and how to discuss/disseminate information to a broad constituency. This an educational model that is easily adaptable for learners working in other areas of the translational research spectrum, e.g. basic, pre-clinical, clinical and implementation sciences.
3302 Student Leadership Training effects on team dynamics and collaborative work in high-pressure, interprofessional team environments
- Emma Tumilty, Celia Chao, Judith F. Aronson, Mark R. Hellmich
-
- Journal:
- Journal of Clinical and Translational Science / Volume 3 / Issue s1 / March 2019
- Published online by Cambridge University Press:
- 26 March 2019, p. 74
-
- Article
-
- You have access Access
- Open access
- Export citation
-
OBJECTIVES/SPECIFIC AIMS: We aimed to explore the impact of leadership training on student’s abilities to work in interprofessional research teams successfully. The Translational Research Design and Interprofessional Skills Development Course (shortened, Interprofessional Research Design) brings together students from different disciplines (science & medicine) and education tracks (PhD, MD, MD/PhD training) in a seven-week course to learn interprofessional collaborative skills and leadership styles that support success in translational research environments, while undertaking a research grant writing project. Part of the course involves a two-day leadership training workshop (12 hours) with the goal of understanding leadership styles and how to develop productive working relationships with team members to help students work more effectively in high-performance, interprofessional team environments. The course incorporates personality testing to develop self-awareness, with various exercises meant to build empathy, as well as knowledge of project management and effective leadership. METHODS/STUDY POPULATION: Nine teams of 32 students (23 MD; 9 Ph.D.) who took part in the Interprofessional Research Design course in 2017 and 2018 were required to write a reflective essay at the end of the course. We used an inductive thematic analysis to evaluate the essays. Reflective essays were coded openly by one study member. Codes were rationalized; then codes were collaboratively developed into themes by the study authors. We identified issues of integration between student groups that functioned well together and those that did not. Reflective writing responses were grouped into overall positive experiences and negative experiences. RESULTS/ANTICIPATED RESULTS: Seven of the nine teams collectively described their experiences positively. Themes related to positive team experience were “empathizing with group members”, “sophisticated communication” and “collaborative workflow/styles.” We found that those who had a positive experience utilized knowledge and skills learned during leadership training to better understand and communicate with their teammates leading to a more collaborative and dynamic workflow. These groups had higher degrees of communication both between their task assignments and within task completion periods. They also showed more awareness of others’ needs in work and communication styles. For those that had a negative experience, themes were related to “basic communication”, “poor integration” and “theory-practice gap of leadership training.” Those who struggled showed much less in- and between-task communication and showed an inability to address the personal needs of other members in communication and workflow (while still often being able to identify them). DISCUSSION/SIGNIFICANCE OF IMPACT: These findings demonstrate the usefulness of leadership training that facilitates student self-awareness and empathy, as well as effective communication, leading to collaborative high-functioning interprofessional teams. Further work incorporating conflict management and exercises to overcome the theory/practice gap of leadership and teamwork training are recommended.
2117 Integrating ethics support as culture change in a translational science environment
- Bernadette McKinney, Emma Tumilty, Joseph Kotarba
-
- Journal:
- Journal of Clinical and Translational Science / Volume 2 / Issue S1 / June 2018
- Published online by Cambridge University Press:
- 21 November 2018, p. 83
-
- Article
-
- You have access Access
- Open access
- Export citation
-
OBJECTIVES/SPECIFIC AIMS: To outline 4 categories of ethics needs identified at a translational science center. To map how research ethics has been further integrated into the center’s culture in response to these needs. To provide insights into how research ethics can be integrated into the translational team science environment. METHODS/STUDY POPULATION: The Institute for Translational Sciences (ITS) at the University of Texas Medical Branch is studied on an organizational level using polyphonic organizational theory and the results of an ethics needs assessment completed in 2010. RESULTS/ANTICIPATED RESULTS: The results will be a map indicating how research ethics has been further integrated into the culture of the ITS in response to the needs identified to ensure the responsible practice of translational science. DISCUSSION/SIGNIFICANCE OF IMPACT: Successful translational science requires shared understanding of communication and values. Achieving agreement in these areas requires the development of strategies for communicating and reinforcing common goals. Research ethics has often been considered an “add on” rather than a “part of” science. Through integrating ethics into various aspects of translational science, the ITS has taken important steps toward achieving the goal of culture change. The map of how the ITS has integrated ethics into organizational activities and structures will serve as a model for other organizations and institutions.
Laura Harrison, Brown Bodies, White Babies: The Politics of Cross-Racial Surrogacy. New York: New York University Press, 2016, ISBN 978-1-4798-9486-4
- Emma Tumilty
-
- Journal:
- Hypatia Reviews Online / Volume 2017 / 2017
- Published online by Cambridge University Press:
- 01 October 2021, E3
- Print publication:
- 2017
-
- Article
-
- You have access Access
- Export citation