Harnessing Openness to Transform American Health Care

The Digital Connections Council (DCC) of the Committee for Economic Development (CED) has been developing the concept of openness in a series of reports. It has analyzed information and processes to determine their openness based on qualities of "accessibility" and "responsiveness." If information is not available or available only under restrictive conditions it is less accessible and therefore less "open." If information can be modified, repurposed, and redistributed freely it is more responsive, and therefore more "open." This report looks at how "openness" is being or might usefully be employed in the healthcare arena. This area, which now constitutes approximately 16-17 percent of GDP, has long frustrated policymakers, practitioners, and patients. Bringing greater openness to different parts of the healthcare production chain can lead to substantial benefits by stimulating innovation, lowering costs, reducing errors, and closing the gap between discovery and treatment delivery. The report is not exhaustive; it focuses on biomedical research and the disclosure of research findings, processes of evaluating drugs and devices, the emergence of electronic health records, the development and implementation of treatment regimes by caregivers and patients, and the interdependence of the global public health system and data sharing and worldwide collaboration

Planting the seeds for future research

"In December 2003, the Division of Tuberculosis Elimination (DTBE), National Center for HIV, STD and TB Prevention (NCHSTP), Centers for Disease Control and Prevention (CDC) convened The Tuberculosis Behavioral and Social Science Research Forum in Atlanta, Georgia. The theme was Planting the Seeds for Future Research. The goals of the Forum were to identify and prioritize TB behavioral and social science research gaps; to use that information to develop a feasible, goal-oriented research agenda that will guide TB behavioral and social science activities over a 5-year period; and to foster productive partnerships and ongoing communications between national, state, and local governmental and nongovernmental behavioral and social science researchers focusing on tuberculosis (TB). The Forum brought together over 60 academicians, researchers, TB controllers and program staff, and CDC representatives. The expectation was that their varied perspectives would contribute to the development of a research agenda addressing high priority behavioral and social aspects of TB prevention and control. The Forum was convened to address the need for further TB behavioral and social science research, as called for in the Institute of Medicine's 2000 report Ending Neglect: The Elimination of Tuberculosis in the United States. The Forum builds on the precedent of a 1994 workshop sponsored by CDC, the National Institutes of Health, and the Health Resources and Services Administration, Tuberculosis and Behavior: National Workshop on Research for the 21st Century." - p. 1Section I. Introduction and Background -- -- Section II. Presentations and Panel Discussions -- Welcome Address: Opening Remarks / Harold Jaffe -- Welcome Address: Behavioral and Social Science Research in Tuberculosis Control / Kenneth Castro -- Welcome Address: Behavioral and Social Sciences in Tuberculosis Elimination / Wanda Walton -- Keynote Session: When Sacred Cows Become the Tiger's Breakfast: Defining A Role for the Social Sciences in Tuberculosis Control / Jessica Ogden -- Keynote Session: Behavior, Society and Tuberculosis Control / Masae Kawamura -- Preliminary Results from the Tuberculosis Behavioral and Social Science Literature Review / Cathy Rawls, Cristina Booker -- Neighborhood Health Messengers: Using Local Knowledge, Trust, and -- Relationships to Create Culturally Effective Tuberculosis Education and Care for Immigrant and Refugee Families / Stefan Goldberg -- Psychosocial, Social Structural, and Environmental Determinants of Tuberculosis Control / Donald E. Morisky -- Community Perspectives in Tuberculosis Control and Elimination: the Personal Experiences of Patients and Providers Panel Discussion / Robin Shrestha-Kuwahara; representatives from DeKalb County and Fulton County Public Health Departments -- Group Discussion of Themes and Issues from Day One / Mark Nichter -- Breakout Group Sessions I: Identifying Research Gaps and Needs -- Turning Research into Practice Panel Discussion / Jane Mezoff -- Sharpening the Focus on Turning Research into Practice: The Promise of Participatory Research Approaches / Shawna Mercer -- Two CDC Models from HIV Prevention: Replicating Effective Programs and Diffusion of Effective Behavioral Interventions / Agatha Eke -- Effective Intervention for Asthma / Leslie Boss -- Potential Funding Opportunities / Kathryn O'Toole -- Closing Remarks: Maintaining the Momentum on Development of a Tuberculosis Research Agenda / Nick DeLuca -- -- Section III. Results of Breakout Groups Sessions -- Identification of Tuberculosis Behavioral and Social Science Research Gaps and Needs -- Outline of Major TB Behavioral and Social Science Research Topics and Subtopics Identified at the Forum -- Descriptions of Major TB Behavioral and Social Science Research Topics and Subtopics Identified at the Forum -- -- Section IV. Appendices -- Appendix A: Forum Agenda -- Appendix B: Presentation Slides -- Appendix C: TB Behavioral and Social Science Research Gaps and Needs: -- Major Research Topics, Subtopics, and Research Questions -- Appendix D: Participant List -- Appendix E: ReferencesForum held in Atlanta, GA, December 10-11, 2003.Forum Proceedings prepared by the Communications, Education, and Behavioral Studies Branch, Clinical and Health Systems Research Branch, Division of Tuberculosis Elimination, Centers for Disease Control and Prevention; Public Health Applications and Research Area, Abt Associates, Inc.Title from title screen (viewed on July 8, 2009).Mode of access: Internet from the CDC web site.Includes bibliographical references (p. 128).Centers for Disease Control and Prevention. Tuberculosis Behavioral and Social Science Research Forum: Planting the Seeds for Future Research. Proceedings of the Tuberculosis Behavioral and Social Science Research Forum; December 10-11, 2003; Atlanta, GA: U.S. Department of Health and Human Services, CDC; 2005

Causal Structure of Brain Physiology after Brain Injury from Subarachnoid Hemorrhage

High frequency physiologic data are routinely generated for intensive care patients. While massive amounts of data make it difficult for clinicians to extract meaningful signals, these data could provide insight into the state of critically ill patients and guide interventions. We develop uniquely customized computational methods to uncover the causal structure within systemic and brain physiologic measures recorded in a neurological intensive care unit after subarachnoid hemorrhage. While the data have many missing values, poor signal-to-noise ratio, and are composed from a heterogeneous patient population, our advanced imputation and causal inference techniques enable physiologic models to be learned for individuals. Our analyses confirm that complex physiologic relationships including demand and supply of oxygen underlie brain oxygen measurements and that mechanisms for brain swelling early after injury may differ from those that develop in a delayed fashion. These inference methods will enable wider use of ICU data to understand patient physiology

Reimagining measurement: Enhancing social impact through better monitoring, evaluation, and learning

Social sector organizations tackle some of the world's most difficult and complex challenges on a daily basis. And, just as in other industries, getting the right data and information at the right time is essential to understanding what an organization needs to achieve, whether it is doing what it set out to do, and what impact its efforts are actually having. Yet, despite marked advances in the tools and methods for monitoring, evaluation, and learning in the social sector, as well as a growing number of bright spots in practice emerging in the field, there is broad dissatisfaction across the sector about how data is -- or is not -- used.Three straightforward principles -- purpose, perspective, and alignment with other actors -- can help the social sector reinvent its approach to measuring social impact, turning data into an asset that benefits both philanthropic organizations and those they seek to help

On Neuromechanical Approaches for the Study of Biological Grasp and Manipulation

Biological and robotic grasp and manipulation are undeniably similar at the level of mechanical task performance. However, their underlying fundamental biological vs. engineering mechanisms are, by definition, dramatically different and can even be antithetical. Even our approach to each is diametrically opposite: inductive science for the study of biological systems vs. engineering synthesis for the design and construction of robotic systems. The past 20 years have seen several conceptual advances in both fields and the quest to unify them. Chief among them is the reluctant recognition that their underlying fundamental mechanisms may actually share limited common ground, while exhibiting many fundamental differences. This recognition is particularly liberating because it allows us to resolve and move beyond multiple paradoxes and contradictions that arose from the initial reasonable assumption of a large common ground. Here, we begin by introducing the perspective of neuromechanics, which emphasizes that real-world behavior emerges from the intimate interactions among the physical structure of the system, the mechanical requirements of a task, the feasible neural control actions to produce it, and the ability of the neuromuscular system to adapt through interactions with the environment. This allows us to articulate a succinct overview of a few salient conceptual paradoxes and contradictions regarding under-determined vs. over-determined mechanics, under- vs. over-actuated control, prescribed vs. emergent function, learning vs. implementation vs. adaptation, prescriptive vs. descriptive synergies, and optimal vs. habitual performance. We conclude by presenting open questions and suggesting directions for future research. We hope this frank assessment of the state-of-the-art will encourage and guide these communities to continue to interact and make progress in these important areas

A framework for teaching biology using StarLogo TNG : from DNA to evolution

Thesis (M. Eng.)--Massachusetts Institute of Technology, Dept. of Electrical Engineering and Computer Science, 2009.Includes bibliographical references (p. 65-66).This thesis outlines a 10-unit biology curriculum implemented in StarLogo TNG. The curriculum moves through units on ecology, the DNA-protein relationship, and evolution. By combining the three topics, it aims to highlight the similarities among different scales and the relationships between them. In particular, through the curriculum, students can see how small-scale changes in molecular processes can create large-scale changes in entire populations. In addition, the curriculum encourages students to engage in problembased learning, by which they are trained to approach questions creatively and independently.by Yaa-Lirng Tu.M.Eng

Can Engineered “Designer” T Cells Outsmart Chronic Hepatitis B?

More than 350 million people worldwide are persistently infected with human heptatitis B virus (HBV) and at risk to develop liver cirrhosis and hepatocellular carcinoma making long-term treatment necessary. While a vaccine is available and new antiviral drugs are being developed, elimination of persistently infected cells is still a major issue. Recent efforts in adoptive cell therapy are experimentally exploring immunotherapeutic elimination of HBV-infected cells by means of a biological attack with genetically engineered “designer” T cells

ACET

The U.S. Department of Health and Human Services (HHS) and the Centers for Disease Control and Prevention (CDC), National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention (NCHHSTP), Division of Tuberculosis Elimination (DTBE) convened a meeting of the Advisory Council for the Elimination of Tuberculosis (ACET). The proceedings were held on June 9-10, 2014 in Building 8 of CDC\u2019s Corporate Square Campus, Conference Room A/B/C, in Atlanta, Georgia.ACET is chartered to provide advice to the Secretary of HHS and the Director of CDC regarding the elimination of tuberculosis (TB); make recommendations regarding policies, strategies, objectives and priorities; address the development and application of new technologies; provide guidance on CDC\u2019s TB Prevention Research portfolio and program priorities; and review the extent to which progress has been made toward eliminating TB.June 9, 2014 -- Opening Session: June 9, 20141 -- NCHHSTP Director\u2019s Report -- Acting DTBE Director\u2019s Report -- CDC\u2019s Strategic Approach to Reduce TB Among -- Foreign-Born Persons in the United States Through Global TB Activities -- Overview of the U.S. Preventive Services Task Force Draft Research Plan -- Overview of CDC\u2019s New Advanced Molecular Detection Program -- ACET Discussion: Resolution/Recommendation Process -- ACET Discussion: DTBE Research Agenda -- Update by the ACET Essential Components Workgroup -- Update by the ACET Corrections Workgroup -- Update by the DTBE Drug Shortages Workgroup -- -- June 10, 2014 -- Opening Session: June 10, 2014 -- Asian Health Services Perspective: Community Partners in the Management of TB -- ACET Business Session -- Public Comment Session -- Closing Session -- -- Participants\u2019 Directory -- Glossary of Acronyms.201

Responsible personalised medicine: Exploring the ethical, legal, social, political and economic issues of manufacturing, distribution, access and reimbursement. A Report of the Responsible Personalised Medicine Project, UCL Future Targeted Manufacturing in Healthcare Hub

This report provides an overview of the ethical, legal, social, political and economic (ELSPE) issues underpinning the “manufacturing, business and regulatory challenges” that confront the development and delivery of affordable and accessible new targeted biological medicines. We specifically focus on the evolving definitions and its implication for the public understanding of personalised medicine (section 1), issues of manufacturing and distribution of Personalised Therapies (section 2) and institutional readiness (section 3) specifically focusing on emerging regulatory and reimbursement pathways (section 3.2) and how these are shaping or being shaped by ‘real world evidence’ (section 3.3). This is followed by our reflection on the implications of and for the entangled, complex and contingent interrelationships between personalised medicine, society and responsibility (section 4). Finally we conclude with discussion of the gaps and priorities for future ELSPE research on manufacturing of advanced biotherapeutics in terms of access, reimbursement, skills and infrastructure, regulation, responsible research and innovation (RRI) and the international political economy of emerging personalised medicine markets (section 5). This is a necessarily narrower review of the spectrum of ELSPE issues that attend personalised medicine activities and reflects this report’s aims to focus on those aspects of personalised medicine addressed by the UCL’s Future Targeted Manufacturing in Healthcare Hub