World Wide Research

Experts examine ways in which the use of increasingly powerful and versatile digital information and communication technologies are transforming research activities across all disciplines. Advances in information and communication technology are transforming the way scholarly research is conducted across all disciplines. The use of increasingly powerful and versatile computer-based and networked systems promises to change research activity as profoundly as the mobile phone, the Internet, and email have changed everyday life. This book offers a comprehensive and accessible view of the use of these new approaches—called “e-Research”—and their ethical, legal, and institutional implications. The contributors, leading scholars from a range of disciplines, focus on how e-Research is reshaping not only how research is done but also, and more important, its outcomes. By anchoring their discussion in specific examples and case studies, they identify and analyze a promising set of practical developments and results associated with e-Research innovations. The contributors, who include Geoffrey Bowker, Christine Borgman, Paul Edwards, Tim Berners-Lee, and Hal Abelson, explain why and how e-Research activity can reconfigure access to networks of information, expertise, and experience, changing what researchers observe, with whom they collaborate, how they share information, what methods they use to report their findings, and what knowledge is required to do this. They discuss both the means of e-Research (new research-centered computational networks) and its purpose (to improve the quality of world-wide research).

Advances in medical, biomedical and health services research have reduced the level of uncertainty in clinical practice. Clinical practice guidelines (CPGs) complement this progress by establishing standards of care backed by strong scientific evidence. CPGs are statements that include recommendations intended to optimize patient care. These statements are informed by a systematic review of evidence and an assessment of the benefits and costs of alternative care options. Clinical Practice Guidelines We Can Trust examines the current state of clinical practice guidelines and how they can be improved to enhance healthcare quality and patient outcomes. Clinical practice guidelines now are ubiquitous in our healthcare system. The Guidelines International Network (GIN) database currently lists more than 3,700 guidelines from 39 countries. Developing guidelines presents a number of challenges including lack of transparent methodological practices, difficulty reconciling conflicting guidelines, and conflicts of interest. Clinical Practice Guidelines We Can Trust explores questions surrounding the quality of CPG development processes and the establishment of standards. It proposes eight standards for developing trustworthy clinical practice guidelines emphasizing transparency; management of conflict of interest ; systematic review-guideline development intersection; establishing evidence foundations for and rating strength of guideline recommendations; articulation of recommendations; external review; and updating. Clinical Practice Guidelines We Can Trust shows how clinical practice guidelines can enhance clinician and patient decision-making by translating complex scientific research findings into recommendations for clinical practice that are relevant to the individual patient encounter, instead of implementing a one size fits all approach to patient care. This book contains information directly related to the work of the Agency for Healthcare Research and Quality (AHRQ), as well as various Congressional staff and policymakers. It is a vital resource for medical specialty societies, disease advocacy groups, health professionals, private and international organizations that develop or use clinical practice guidelines, consumers, clinicians, and payers.

In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.

This book is a collection of fictionalised case studies of everyday ethical dilemmas and challenges, encountered in the process of conducting global health research in places where the effects of global, political and economic inequality are particularly evident. It is a training tool to fill the gap between research ethics guidelines, and their implementation 'on the ground'. The case studies, therefore, focus on 'relational' ethics: ethical actions and ideas that emerge through relations with others, rather than in regulations. This work was published by Saint Philip Street Press pursuant to a Creative Commons license permitting commercial use. All rights not granted by the work's license are retained by the author or authors.

This special issue of the STI Review focuses on "The Global Research Village"

Clinical trials used to be conducted overwhelmingly in the US and Europe but for a range of economic, technical and ethical reasons, the number of multicentre studies recruiting subjects in different regions of the World has grown exponentially. New medicines are tested in vast research networks involving several countries, hospitals and other medical institutions, and hundreds of individual subjects. In Pharmaceutical Research, Democracy and Conspiracy, Edison Bicudo examines the connections between global and local scales, exploring how it is possible for social actors as different as global companies and patients of local hospitals to come together and establish social relationships that may last many years. He also identifies the implications of these global-local relationships for the financial, technical and cultural structures of the participating hospitals. His study draws on fieldwork conducted in five countries: the UK, Spain, France, Brazil and South Africa. Shining a light on the social mediations that enable the encounter between these rationalities, the author concludes that this has the practical effect of subjecting countries hosting trials to institutional engineering. Hospitals and research agencies create new, sometimes surprising, institutional arrangements to cope with international research projects, which change relations between physicians and patients, as they acquire new roles as clinical investigators and research subjects. Frequently, such shifts deviate the institutional structures of medical institutions away from democratic, and towards conspiratorial, schemes. The book reviews the concept of mediation in sociological thought, proposes further developments in Habermas’ theory of communicative action, and offers some political reflection about the role of institutions in contemporary democracies.