Trading Places: What the Research Participant Can Tell the Investigator About Informed Consent

The issues discussed in this article emerged from a study that explored the decision-making processes used by research participants when deciding to participate in human subjects’ research. We discuss the current research and regulatory environment and its influences on participant decision-making. The results of this study create a framework for understanding the challenges of the current informed consent process and offers insights into what may be needed to create an environment that allows research participants to make more enlightened decisions

Ethics-A Bridge for Communities and Scientists: A Curriculum for Community Outreach and Education

The Ethics - A Bridge for Communities and Scientists (E-ABCs) project was conducted in the community of Libby, Montana where it examined the ethical, legal, and social implications of asbestos contamination. The project was designed to explore how an awareness of ethics can support and enrich community dialogue and inform decision-making. During the six year funding cycle for this project, a number of efforts were undertaken in order to provide resources for Libby residents who have diverse and changing needs and interests. The lessons learned from these efforts are reflected throughout the website and are summarized in the manual entitled, Ethics - A Bridge for Communities and Scientists: A Curriculum for Community Outreach and Education

From \u3ci\u3e Good Intentions to Good Actions:\u3c/i\u3e A Patient Safety Manual for Rural Healthcare Settings

The materials offered in this patient safety manual draw on information from a robust database consisting of qualitative and quantitative data gathered over the course of nine years. These data come from a 4-year patient safety study conducted in rural hospitals in a 9-state area as well as a series of additional healthcare studies that focused on ethics and decision-making in rural settings. The manual is a resource developed to fit a rural context. The first chapter discusses the national patient safety movement. The succeeding chapters discuss definitions of errors and lessons learned from the multi-method patient safety study. The final chapters discuss approaches that might help achieve the delivery of safer care and also provides resources that can be used by rural healthcare providers in order to support system-wide patient safety efforts

Ethics Conflicts in Rural Communities: Recognizing and Disclosing Medical Errors

This chapter explores the ethical responsibility of health care providers to administer safe clinical care. It further explores the challenges that such providers can experience in recognizing, reporting, and disclosing medical errors. Medical errors can cause serious harm (to the patient, provider and institution or clinic) and can prove to be expensive, stressful, time-consuming, and personally devastating. While rural health care providers frequently underscore their desire to provide safe care, they also report that it is very difficult to develop and implement strategies that reduce the risk of making errors. Studies show that there is limited agreement among health care providers when defining, reporting, disclosing, or resolving error. Providers who wish to actively pursue strategies that heighten safety may become inhibited by this lack of agreement. This chapter presents findings from empirical ethics studies involving rural participants from 14 states. These studies shed light on the ethics issues surrounding medical errors that occur in physicians’ offices and hospitals. The two case examples that this chapter presents reflect both the experiences of rural health care providers, and the complexities that can accompany the search for ethically-attuned processes for error disclosure and resolution

Bioethics Activities in Rural Hospitals

Hospital ethics committees have evolved as a response to complicated legal, ethical, and social dilemmas that accompany modern medicine. In the United States, their growth has been augmented by Joint Commission for the Accreditation of Healthcare Organizations (JCAHO) standards and the Patient Self-Determination Act. There appears to be an implicit presumption that all clinical ethics consultation practices are relatively similar. Finally, there is heightened awareness of the needs for quality standards and assessment of the outcomes of ethics consultations

From Here to There: Lessons from an Integrative Patient Safety Project in Rural Health Care Settings

To date, few studies have focused on patient safety issues that occur in rural health care settings. This article presents and discusses the methodology and the key findings obtained from a multi-method research study of patient safety in rural health care settings, funded by the Agency for Healthcare Research and Quality. Interdisciplinary teams of health care providers from 30 rural hospitals and Indian Health Service settings in a nine-state area of the West participated in this initiative. Study instruments included surveys, interviews, and textual analysis of responses to case studies. Data indicate that health care providers strongly affirm the importance of patient safety and want access to guides and resources that help achieve that goal. However, the lack of shared agreement regarding the definition, recognition, responsibility, reporting, and disclosing of errors compromises the development of a patient safety agenda. Using e-mail and a secure Web site, the authors developed a model for retrieving data, increasing discussion, providing resources, and disseminating findings

The Protectors and the Protected: What Regulators and Researchers Can Learn from IRB Members and Subjects

Clinical research is increasingly conducted in settings that include private physicians’ offices, clinics, community hospitals, local institutes, and independent research centers. The migration of such research into this new, non–academic environment has brought new cadres of researchers into the clinical research enterprise and also broadened the pool of potential research participants. Regulatory approaches for protecting human subjects who participate in research have also evolved. Some institutions retain their own Institutional Review Boards (IRBs), but Independent IRBs, community hospital IRBs and community–based IRBs also fulfill oversight responsibilities. This article sheds light on this evolving world by discussing the findings gleaned from two studies: a study of the decision making processes used by members who serve on different kinds of IRBs and a study of the decision making processes employed by research participants. The article then discusses how the key findings may inform proposed revisions to the Common Rule

A Piece of Art

Projektets utgångspunkt är ett nytt konstmuseum i Uppsala, i området bakom Uppsala centralstation, som nyligen genomgått ett ansiktslyft. Museets långsmala karaktär har hämtats från det intilliggande godsmagasinet och från tomtens form. Genom byggnaden har ett diagonalt stråk öppnats, för att ge möjlighet åt fotgängare att passera genom byggnaden och för att skapa liv och rörelse på platsen. Genom fönstren i passagen kan förbipasserande få en skymt av vad som händer inuti muséet. I passagen ligger museets entré, den pedagogiska verksamheten och ett kafé för allmänheten. Museets fasad är inspirerad av den arabiska mashrabiyan. Byggnaden har fönster längs hela fasaden, som i sin tur är täckta av skärmar tillverkade av sträckmetall. Ljuset tillåts komma in i byggnaden samtidigt som sträckmetallen täcker fasaden och bevarar något av museets hemligheter för förbipasserande. Museets inre väggar består av massiva betongskivor, placerade i ett rutnät som fått sin riktning av passagen genom huset. Betongrutnätet bildar två typer av rum, de inre rummen med en mer stängd karaktär och en traditionell, fyrkantig rumsform, och de yttre triangulära rummen som får dagsljus utifrån, genom sträckplåten som täcker de yttre glasväggarna. Under kvällstid lyser museet själv upp omgivningarna genom hålen i sträckmetallen.The project is about creating a new art museum in Uppsala, situated in the area behind Uppsala centralstation, where extensive retouching of the area recently was made. The long and slender character of the buildning derives from the shape of the old cargo warehouse next to the museum, and from the shape of the plot. Through the building runs a passage that lends pedestrian a shortcut through it, which will bring life to the area. Along the passage through the museum, the ground floor of the building is entirely covered by windows, in order to give passing strollers a glimpse of what is happening inside the museum. The entrance, the educational activities and the café is situated along the passage. The facade of the museum is inspired by the arabic mashrabiya fenomenon. The exterior facade of the building is entirely covered with windows which in turn are covered with screens of expanded metal. Daylight may enter through the tiny holes in the screens, while at the same time the metal screens manages to keep some of the secrets of the museum from the people passing by. The inner walls, made of concrete, form a diagonal grid inside the building, creating two types of rooms. The inner rooms, which are quadratic and have a more closed and darker character, and the outer rooms which are triangular and receive light from the outside through the expanded metal screens. At nighttime, instead the museum itself lights the place around it