Sharing Research Data To Improve Public Health In Africa

Sharing research data on public health issues can promote expanded scientific inquiry and has the potential to advance improvements in public health. Although sharing data is the norm in some research fields, sharing of data in public health is not as firmly established. In March 2015, the National Research Council organized an international conference in Stellenbosch, South Africa, to explore the benefits of and barriers to sharing research data within the African context. The workshop brought together public health researchers and epidemiologists primarily from the African continent, along with selected international experts, to talk about the benefits and challenges of sharing data to improve public health, and to discuss potential actions to guide future work related to public health research data sharing. Sharing Research Data to Improve Public Health in Africa summarizes the presentations and discussions from this workshop.

The purpose of this book is to project diplomacy as an unavoidable instrument for monitoring, prevention and control of health and disaster risks among African countries. The book advocates health cooperation in Africa at a time when pandemics are recurrent. Outside of the WHO, many countries, even within regional groupings have not actively pursued health cooperation. We intend this book to provide the basis for advocating the inclusion of health diplomacy in the curricula of the training of the African diplomat with the hope to stimulate gradual policy shifts in foreign ministries, regional groupings, and the African Union.

Genomic Data Sharing: Case Studies, Challenges, and Opportunities for Precision Medicine provides a comprehensive overview of current and emerging issues in genomic data sharing. In this book, international leaders in genomic data examine these issues in-depth, offering practical case studies that highlight key successes, challenges and opportunities. Sections discuss the eMERGE Network, Undiagnosed Disease Network, Vanderbilt Biobank, Marshfield Clinic Biobank, Minnesota Authorization, Rochester Epidemiology Project, NIH sponsored biobanks, GINA, and Global Alliance for Genomics and Health (GA4GH). In addition to these perspectives from the frontlines, the book also provides succinct overviews of ethical, legal, social and IT challenges. Clinician investigators, clinicians affiliated with academic medical centers, policymakers and regulators will also gain insights that will allow them to navigate the increasingly complex ethical, social and clinical landscape of genomic data sharing. Covers both technical and ELSI (ethical, legal, and social implications) perspectives on genomic data sharing Includes applied case studies of existing genomic data sharing consortia, including the eMERGE Network, Undiagnosed Disease Network, and the Global Alliance for Genomics and Health (GA4GH), among others Features chapter contributions from international leaders in genomic data sharing

The theme of this international symposium is the promotion of greater sharing of scientific data for the benefit of research and broader development, particularly in the developing world. This is an extraordinarily important topic. Indeed, I have devoted much of my own career to matters related to the concept of openness. I had the opportunity to promote and help build the open courseware program at the Massachusetts Institute of Technology (MIT). This program has made the teaching materials for all 2,000 subjects taught at MIT available on the Web for anyone, anywhere, to use anytime at no cost. In countries where basic broadband was not available, we shipped it in on hard drives and compact disks. Its impact has been worldwide, but it has surely had the greatest impact on the developing world. I am also a trustee of a nonprofit organization named Ithaca that operates Journal Storage (JSTOR) and other entities that make scholarly information available at very low cost. The culture of science has been international and open for centuries. Indeed, the scientific enterprise can only work when all information is open and accessible, because science works through critical analysis and replication of results. In recent years, as some scientific data, and especially technological data, have increased in economic value frequently has caused us to be far less open with information than business and free enterprise require us to be. Indeed, the worldwide shift to what is known as open innovation is strengthening every day. Finally, since the end of World War II, the realities of modern military conflict and now terrorism have led governments to restrict information through classification. This is important, but I believe that we classify far too much information. The last thing we need today, at the beginning of the twenty-first century, is further arbitrary limitations on the free flow of scientific information, whether by policies established by governments and businesses, or by lack of information infrastructure. For all these reasons, the international sharing of scientific data is one of the topics of great interest here at the National Academies and has been the subject of many of our past reports. This is the primary reason why this symposium has been co-organized by the NRC's Policy and Global Affairs Division-the Board on International Scientific Organizations (BISO) and the Board on Research Data and Information (BRDI). The Case for International Sharing of Scientific Data: A Focus on Developing Countries: Proceedings of a Symposium summarizes the symposium.

Despite sending huge sums of money on health every year the African regions burden of disease is persistently high. Most of the countries in the region are lagging behind in achieving the health-related United Nations Millennium Development Goals. The African regions dismal health situation has largely been blamed on weakness pertaining to such factors as health leadership and governance; service delivery; health workforce; medicines, vaccines, and health technologies; health information; and health system financing that have undermined the capacity of health systems of countries in the region to improve population health without wastage of resources. Institutionalising health system efficiency monitoring, as a basis for the design and implementation of appropriate policy interventions, has been proposed as an effective way of curbing wastage of health system inputs. Efficiency of Health System Units in Africa: A Data Envelopment Analysis is the first book of its kind on application of the data envelopment analysis technique to examine the efficiency of health system decision-making units in Africa. The book interlaces lecture notes with research articles and case studies to equip students and practitioners of economics, operations research, management science, and public health with knowledge and skills for undertaking technical efficiency, cost efficiency, and total factor productivity analyses.

This book provides a current review of Medical Research Ethics on a global basis. The book contains chapters that are historically and philosophically reflective and aimed to promote a discussion about controversial and foundational aspects in the field. An elaborate group of chapters concentrates on key areas of medical research where there are core ethical issues that arise both in theory and practice: genetics, neuroscience, surgery, palliative care, diagnostics, risk and prediction, security, pandemic threats, finances, technology, and public policy.This book is suitable for use from the most basic introductory courses to the highest levels of expertise in multidisciplinary contexts. The insights and research by this group of top scholars in the field of bioethics is an indispensable read for medical students in bioethics seminars and courses as well as for philosophy of bioethics classes in departments of philosophy, nursing faculties, law schools where bioethics is linked to medical law, experts in comparative law and public health, international human rights, and is equally useful for policy planning in pharmaceutical companies.

The book will explain previously unconnected clinical data such as why mammography works better for women age 50-59 than it does for women age 40-49, why adjuvant chemotherapy works best for premenopausal patients with positive lymph nodes, and it may also explain the racial disparity in outcome. In particular, it points to the perioperative period when systemic inflammation persists for a week or so. This can lead to a variety of mechanisms whereby single cancer cells (perhaps from the marrow) begin division and angiogenesis of dormant avascular micrometastases occurs leading to early relapses. With chapters presented from distinguished scientists and physicians in a variety of specialties that relate to and border the effects we present, this volume can be used as a reference for practicing physicians and as a jumping-off point for researchers to explore new therapeutic opportunities.

Most accounts of health and healthcare in Africa are written by foreigners. African Health Leaders: Making Change and Claiming the Future redresses the balance. Written by Africans, who have themselves led improvements in their own countries, the book discusses the creativity, innovation and leadership that has been involved tackling everything from HIV/AIDs, to maternal, and child mortality and neglected tropical diseases. It celebrates their achievements and shows how, over three generations, African health leaders are creating a distinctively African vision of health and health systems. The book reveals how African Health Leaders are claiming the future - in Africa, but also by sharing their insights and knowledge globally and contributing fully to improving health throughout the world. It illustrates how African leadership can enable foreign agencies and individuals working in Africa to avoid all those misunderstandings and misinterpretations of culture and context which lead to wasted efforts and frustrated hopes. African Health Leaders challenges Africans to do more for themselves; build on success; tackle weak governance, corrupt systems and low expectations and claim the future. It sets out what Africa needs from the rest of the world in the spirit of global solidarity - not primarily in aid, but through investment, collaboration, partnership and co-development. It concludes with a vision for improvement based on three foundations: an understanding that 'health is made at home'; the determination to offer access to health services for everyone; and an insistence on the pursuit of quality.