Search results for: confidentiality and immutability

Authors: Eylem Tas

Abstract:

This empirical study aims to explore the development of students' entrepreneurial skills through problem-based learning within the context of university-industry collaborations (UICs) in curriculum co-design and co-delivery (CDD). The research question guiding this study is: "How do problem-based learning and university-industry collaborations influence the development of students' entrepreneurial skills in the context of curriculum co-design and co-delivery?” To address this question, the study was conducted in a big city in Germany and involved interviews with stakeholders from various industries, including the private sector, government agencies (govt), and non-governmental organizations (NGOs). These stakeholders had established collaborative partnerships with the targeted university for projects encompassing entrepreneurial development aspects in CDD. The study sought to gain insights into the intricacies and subtleties of UIC dynamics and their impact on fostering entrepreneurial skills. Qualitative content analysis, based on Mayring's guidelines, was employed to analyze the interview transcriptions. Through an iterative process of manual coding, 442 codes were generated, resulting in two main sections: "the role of problem-based learning and UIC in fostering entrepreneurship" and "challenges and requirements of problem-based learning within UIC for systematical entrepreneurship development.” The chosen experimental approach of semi-structured interviews was justified by its capacity to provide in-depth perspectives and rich data from stakeholders with firsthand experience in UICs in CDD. By enlisting participants with diverse backgrounds, industries, and company sizes, the study ensured a comprehensive and heterogeneous sample, enhancing the credibility of the findings. The first section of the analysis delved into problem-based learning and entrepreneurial self-confidence to gain a deeper understanding of UIC dynamics from an industry standpoint. It explored factors influencing problem-based learning, alignment of students' learning styles and preferences with the experiential learning approach, specific activities and strategies, and the role of mentorship from industry professionals in fostering entrepreneurial self-confidence. The second section focused on various interactions within UICs, including communication, knowledge exchange, and collaboration. It identified key elements, patterns, and dynamics of interaction, highlighting challenges and limitations. Additionally, the section emphasized success stories and notable outcomes related to UICs' positive impact on students' entrepreneurial journeys. Overall, this research contributes valuable insights into the dynamics of UICs and their role in fostering students' entrepreneurial skills. UICs face challenges in communication and establishing a common language. Transparency, adaptability, and regular communication are vital for successful collaboration. Realistic expectation management and clearly defined frameworks are crucial. Responsible data handling requires data assurance and confidentiality agreements, emphasizing the importance of trust-based relationships when dealing with data sharing and handling issues. The identified key factors and challenges provide a foundation for universities and industrial partners to develop more effective UIC strategies for enhancing students' entrepreneurial capabilities and preparing them for success in today's digital age labor market. The study underscores the significance of collaborative learning and transparent communication in UICs for entrepreneurial development in CDD.

Keywords: collaborative learning, curriculum co-design and co-delivery, entrepreneurial skills, problem-based learning, university-industry collaborations

Procedia PDF Downloads 59

Authors: Pippa Sipanoun, Jo Wray, Kate Oulton, Faith Gibson

Abstract:

Background: With rapidly evolving digital health innovation, there is a need for digital health transformation that is accessible and sustainable, that demonstrates utility for all stakeholders while maintaining data safety. Great Ormond Street Hospital for Children aimed to future-proof the hospital by transitioning to an electronic patient record (EPR) system with a tethered patient portal (MyGOSH) in April 2019. MyGOSH patient portal enables patients 12 years or older (with their parent's consent) to access their digital health data. This includes access to results, documentation, and appointments that facilitate communication with their care team. As part of the Going Digital Study conducted between 2018-2021, data were collected from a sample of all relevant stakeholders before and after EPR and MyGOSH implementation. Data collection reach was wide and included the hospital legal and ethics teams. Aims: This study aims to understand the ethical and legal implications of young people and their parents accessing their digital health data. Methods: A focus group was conducted. Recruited participants were members of the Great Ormond Street Hospital Paediatric Bioethics Centre. Participants included expert and lay members from the Committee from a variety of professional or academic disciplines. Written informed consent was provided by all participants (n=7). The focus group was recorded, transcribed verbatim, and analyzed using thematic analysis. Results: Six themes were identified: access, competence and capacity - granting access to the system; inequalities in access resulting in inequities; burden, uncertainty and responding to change - managing expectations; documenting, risks and data safety; engagement, empowerment and understanding – how to use and manage personal information; legal considerations and obligations. Discussion: If healthcare professionals are to empower young people to be more engaged in their care, the importance of including them in decisions about their health is paramount, especially when they are approaching the age of becoming the consenter for treatment. Complexities exist in assessing competence or capacity when granting system access, when disclosing sensitive information, and maintaining confidentiality. Difficulties are also present in managing clinician burden, managing user expectations whilst providing an equitable service, and data management that meets professional and legal requirements. Conclusion: EPR and tethered-portal implementation at Great Ormond Street Hospital for Children was not only timely, due to the need for a rapid transition to remote consultations during the COVID-19 pandemic, which would not have been possible had EPR/MyGOSH not been implemented, but also integral to the digital health revolution required in healthcare today. This study is highly relevant in understanding the complexities around young people and their parents accessing their digital health data and, although the focus of this research related to portal use and access, the findings translate to young people in the wider digital health context. Ongoing support is required for all relevant stakeholders following MyGOSH patient portal implementation to navigate the ethical and legal complexities. Continued commitment is needed to balance the benefits and burdens, promote inclusion and equity, and ensure portal utility for patient benefit, whilst maintaining an individualized approach to care.

Keywords: patient portal, young people and their parents, ethical, legal

Procedia PDF Downloads 114

Authors: Paul J. McKay

Abstract:

Large-scale genome-wide association studies (GWAS) investigating genetic contributions to sexual orientation and gender identity are largely lacking and may reduce stigma experienced in the LGBTQ+ community by providing an underlying biological explanation for queerness. While there is a growing consensus within the scientific community that genetic makeup contributes – at least in part – to sexual orientation and gender identity, there is a marked lack of genomics research exploring polygenic contributions to queerness. Based on recent (2019) findings from a large-scale GWAS investigating the genetic architecture of same-sex sexual behavior, and various additional peer-reviewed publications detailing novel insights into the molecular mechanisms of sexual orientation and gender identity, we hypothesize that sexual orientation and gender identity are complex, multifactorial, and polygenic; meaning that many genetic factors contribute to these phenomena, and environmental factors play a possible role through epigenetic modulation. In recent years, large-scale GWAS studies have been paramount to our modern understanding of many other complex human traits, such as in the case of autism spectrum disorder (ASD). Despite possible benefits of such research, including reduced stigma towards queer people, improved outcomes for LGBTQ+ in familial, socio-cultural, and political contexts, and improved access to healthcare (particularly for trans populations); important risks and considerations remain surrounding this type of research. To mitigate possibilities such as invalidation of the queer identities of existing LGBTQ+ individuals, genetic discrimination, or the possibility of euthanasia of embryos with a genetic predisposition to queerness (through reproductive technologies like IVF and/or gene-editing in utero), we propose a community-engaged research (CER) framework which emphasizes the privacy and confidentiality of research participants. Importantly, the historical legacy of scientific research attempting to pathologize queerness (in particular, falsely equating gender variance to mental illness) must be acknowledged to ensure any future research conducted in this realm does not propagate notions of homophobia, transphobia or stigma against queer people. Ultimately, in a world where same-sex sexual activity is criminalized in 69 UN member states, with 67 of these states imposing imprisonment, 8 imposing public flogging, 6 (Brunei, Iran, Mauritania, Nigeria, Saudi Arabia, Yemen) invoking the death penalty, and another 5 (Afghanistan, Pakistan, Qatar, Somalia, United Arab Emirates) possibly invoking the death penalty, the importance of this research cannot be understated, as finding a biological basis for queerness would directly oppose the harmful rhetoric that “being LGBTQ+ is a choice.” Anti-trans legislation is similarly widespread: In the United States in 2022 alone (as of Oct. 13), 155 anti-trans bills have been introduced preventing trans girls and women from playing on female sports teams, barring trans youth from using bathrooms and locker rooms that align with their gender identity, banning access to gender affirming medical care (e.g., hormone-replacement therapy, gender-affirming surgeries), and imposing legal restrictions on name changes. Understanding that a general lack of knowledge about the biological basis of queerness may be a contributing factor to the societal stigma faced by gender and sexual orientation minorities, we propose the initiation of large-scale GWAS studies investigating the genetic basis of gender identity and sexual orientation.

Keywords: genome-wide association studies (GWAS), sexual and gender minorities (SGM), polygenicity, community-engaged research (CER)

Procedia PDF Downloads 69

Authors: Julie M. Novak, Simone K. Brennan, Lacey Brim

Abstract:

Undergraduate medical education (UME) curriculum notably addresses micro-level communications (e.g., patient-provider, intercultural, inter-professional), yet frequently under-examines the role and impact of organizational communication, a more macro-level. Organizational communication, however, functions as foundation and through systemic structures of an organization and thereby serves as hidden curriculum and influences learning experiences and outcomes. Yet, little available research exists fully examining how students experience organizational communication while in medical school. Extant literature and best practices provide insufficient guidance for UME programs, in particular. The purpose of this study was to map and examine current organizational communication systems and processes in a UME program. Employing a phenomenology-grounded and participatory approach, this study sought to understand the organizational communication system from medical students' perspective. The research team consisted of a core team and 13 medical student co-investigators. This research employed multiple methods, including focus groups, individual interviews, and two surveys (one reflective of focus group questions, the other requesting students to submit ‘examples’ of communications). To provide context for student responses, nonstudent participants (faculty, administrators, and staff) were sampled, as they too express concerns about communication. Over 400 students across all cohorts and 17 nonstudents participated. Data were iteratively analyzed and checked for triangulation. Findings reveal the complex nature of organizational communication and student-oriented communications. They reveal program-impactful strengths, weaknesses, gaps, and tensions and speak to the role of organizational communication practices influencing both climate and culture. With regard to communications, students receive multiple, simultaneous communications from multiple sources/channels, both formal (e.g., official email) and informal (e.g., social media). Students identified organizational strengths including the desire to improve student voice, and message frequency. They also identified weaknesses related to over-reliance on emails, numerous platforms with inconsistent utilization, incorrect information, insufficient transparency, assessment/input fatigue, tacit expectations, scheduling/deadlines, responsiveness, and mental health confidentiality concerns. Moreover, they noted gaps related to lack of coordination/organization, ambiguous point-persons, student ‘voice-only’, open communication loops, lack of core centralization and consistency, and mental health bridges. Findings also revealed organizational identity and cultural characteristics as impactful on the medical school experience. Cultural characteristics included program size, diversity, urban setting, student organizations, community-engagement, crisis framing, learning for exams, inefficient bureaucracy, and professionalism. Moreover, they identified system structures that do not always leverage cultural strengths or reduce cultural problematics. Based on the results, opportunities for productive change are identified. These include leadership visibly supporting and enacting overall organizational narratives, making greater efforts in consistently ‘closing the loop’, regularly sharing how student input effects change, employing strategies of crisis communication more often, strengthening communication infrastructure, ensuring structures facilitate effective operations and change efforts, and highlighting change efforts in informational communication. Organizational communication and communications are not soft-skills, or of secondary concern within organizations, rather they are foundational in nature and serve to educate/inform all stakeholders. As primary stakeholders, students and their success directly affect the accomplishment of organizational goals. This study demonstrates how inquiries about how students navigate their educational experience extends research-based knowledge and provides actionable knowledge for the improvement of organizational operations in UME.

Keywords: medical education programs, organizational communication, participatory research, qualitative mixed methods

Procedia PDF Downloads 115