An Organ for My Child: Public Appeals for Limited Resources.

The case of Jamie Fiske and subsequent public appeals for particular children by President Ronald Reagan represent classic cases in pediatric bioethics in which parents or others publicly appealed for a donor organ for a particular child. These raise questions about the appropriate boundaries for public appeals for a limited resource for a particular child and how the press and medical community should respond to such appeals. Public appeals by parents to advocate for their child to receive a limited resource above others promote rationing by morally irrelevant factors and shift the public focus from the national shortage of organs for transplant to the needs of a particular child. Yet these appeals are understandable and will likely continue. Recognizing this, we consider appropriate responses by the media, transplant community, hospitals, and individual clinicians.

Do-It-Yourself Artificial Pancreas System and the OpenAPS Movement.

People with diabetes have been experimenting with and modifying their own diabetes devices and technologies for many decades in order to achieve the best possible quality of life and improving their long-term outcomes, including do-it-yourself (DIY) closed loop systems. Thousands of individuals use DIY closed loop systems globally, which work similarly to commercial systems by automatically adjusting and controlling insulin dosing, but are different in terms of transparency, access, customization, and usability. Initial outcomes seen by the DIY artificial pancreas system community are positive, and randomized controlled trials are forthcoming on various elements of DIYAPS technology.

16. Diabetes Advocacy: Standards of Medical Care in Diabetes-2019.

The American Diabetes Association (ADA) "Standards of Medical Care in Diabetes" includes the ADA's current clinical practice recommendations and is intended to provide the components of diabetes care, general treatment goals and guidelines, and tools to evaluate quality of care. Members of the ADA Professional Practice Committee, a multidisciplinary expert committee (https://doi.org/10.2337/dc20-SPPC), are responsible for updating the Standards of Care annually, or more frequently as warranted. For a detailed description of ADA standards, statements, and reports, as well as the evidence-grading system for ADA's clinical practice recommendations, please refer to the Standards of Care Introduction (https://doi.org/10.2337/dc20-SINT). Readers who wish to comment on the Standards of Care are invited to do so at professional.diabetes.org/SOC.

Twenty-Five Years of Research and Advocacy on Violence Against Women: What Have We Accomplished, and Where Do We Go From Here? A Conversation.

This article is a conversation between two academic experts, Callie Rennison and Nikki Jones, who endeavor to sum up what has been accomplished in eliminating violence against women in the United States during the 25 years of the journal's existence. Domestic violence, rape, and sexual harassment are discussed. Although prevalence rates are down in domestic violence, rape and sexual harassment remain persistent problems. Looking at violence against women from an analysis of President Trump voters in the 2016 U.S. presidential election, Rennison and Jones observe the extent to which the current ideas and attitudes of women-both young and old-will need to change before violence can be eliminated. Rather than viewing events in the United States as totally negative, they see them as presenting new opportunities for greater understanding of violence against women and for new methods of prevention and perpetrator accountability.

Safeguarding the patient in municipal healthcare-A hermeneutic focus group study of Nordic nursing leadership.

AIM: This study illuminates the meaning and purpose of clinical presence in nursing leadership in municipal home care from the first-line nurse manager's own perspective. BACKGROUND: Being a first-line nurse manager in the context of home care is demanding due to demographic changes and an ever-increasing number of elderly suffering from chronic diseases. Leading in this context entails leading from a distance because patients live and receive care in their homes. First-line nurse managers express the importance of clinical presence. However, there is a paucity of studies from home care of the meaning and purpose of presence. The theory of caritative leadership and the model of caring in nursing leadership served as the starting point for this study. METHODS: Hermeneutic abductive approach using a purposive sample of three semistructured focus group interviews with 11 first-line nurse managers in home care in three Nordic countries. RESULT: This study shows that first-line nurse managers described the meaning and purpose of their clinical presence in home care as safeguarding the patient by taking overall responsibility for care, securing the patients' voices, building and maintaining trustful relations, and securing a sensible economy. CONCLUSION: Our findings indicate that clinical presence serves the purpose of taking the overall responsibility for care and safeguarding the patient. Presence is perceived a necessity to verify staff providing the best possible care. First-line nurse managers acted metaphorically as a shield to protect patient care, which is the main concern in their leadership. The findings add new knowledge to the significance of caring in nursing leadership and the theory of caritative leadership. IMPLICATIONS FOR NURSING MANAGEMENT: First-line nurse managers need to be clinically present in order to safeguard the patient and to fulfil their threefold responsibilities for the patient, the staff and the economy. This study might also contribute to the political discussion concerning why nurses has to be first-line nurse managers and cannot be replaced by economists.

Envisioning Future Directions: Conversations With Leaders in Domestic and Sexual Assault Advocacy, Policy, Service, and Research.

This article delves into the views of 72 leaders in domestic violence and sexual assault advocacy, policy, service, and research to determine their vision for the future direction of the field. Through discussions with experts, we identified numerous strategies necessary to best meet the needs of domestic violence and sexual assault victims. Common themes focused on the need to (a) examine the context of victims' and offenders' experiences; (b) increase cultural competence to adequately provide appropriate victim services and criminal justice responses for underserved, marginalized, and culturally specific populations; (c) increase reliance on victims' voices; (d) continue to develop partnerships at both the community and the state levels and ensure the role of local communities; (e) expand the concept of successful outcomes that can be reliably and validly assessed; (f) emphasize mixed-methods approaches to address these questions, in recognition that various methods complement each other; and (g) be open to novel or emerging approaches to intervention.

Autism Scientists' Reflections on the Opportunities and Challenges of Public Engagement: A Qualitative Analysis.

This article draws upon qualitative interviews in order to examine how UK based research psychologists understand public engagement activities and interactions with autistic advocates. Researchers describe public engagement as difficult and understand these difficulties as stemming from autistic impairments. In particular, it is reported that a heterogeneity of autism impairments means there is little agreement on the form research should take, while socio-communicative impairments make interactions difficult. Conversely, researchers describe autistic individuals as having the capacity to positively influence research. In this paper we discuss the nature of these claims and stress the need for autism-specific modes of engagement to be developed.

Incorporating Patient Advocates in Oncology Clinical Development: Lessons Learned From a Novel Pilot Program.

The advent of patient-focused drug development (PFDD) has underscored the priority of engaging the "voice of the patient" in therapy development. Industry sponsors are working to enhance engagement of patients early, particularly within decision making for design and execution of clinical trials. This trend is especially significant within oncology, as industry leaders partner with patient advocacy organizations, individual patients, and clinicians to enhance patient-centricity. These partnerships often require a willingness to change attitudes, approaches, and processes to reshape traditional models of drug development. In 2016, Bayer Oncology launched a pilot program called the Patient Advocate Advisory Council (PAAC), to design and execute a program whereby patients join clinical development teams. The PAAC, composed of experienced patient advocates from the US and Europe, worked closely with company leaders to design and execute a pilot in an ongoing clinical development program. The PAAC and Bayer teams have identified important learnings from the first phase of the program, emphasizing earlier engagement of patient advisors, launching the enhanced training platform, and recruiting additional PAAC members to expand the initiative's reach across the cancer community. A critical success factor is having champions for patient engagement within the company to ensure that activities are streamlined and standardized as patient engagement becomes more common. This is particularly important given that patient engagement should be a long-term investment with sufficient and sustained resources. PAAC members and Bayer have committed to sharing learnings, to advance opportunities for successful patient engagement in drug development throughout the oncology therapeutic landscape.