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Politically active individuals and organizations make huge investments of time, energy, and money to influence everything from election outcomes to congressional subcommittee hearings to local school politics, while other groups and individual citizens seem woefully underrepresented in our political system.The Unheavenly Chorusis the most comprehensive and systematic examination of political voice in America ever undertaken--and its findings are sobering. The Unheavenly Chorusis the first book to look at the political participation of individual citizens alongside the political advocacy of thousands of organized interests--membership associations such as unions, professional associations, trade associations, and citizens groups, as well as organizations like corporations, hospitals, and universities. Drawing on numerous in-depth surveys of members of the public as well as the largest database of interest organizations ever created--representing more than thirty-five thousand organizations over a twenty-five-year period--this book conclusively demonstrates that American democracy is marred by deeply ingrained and persistent class-based political inequality. The well educated and affluent are active in many ways to make their voices heard, while the less advantaged are not. This book reveals how the political voices of organized interests are even less representative than those of individuals, how political advantage is handed down across generations, how recruitment to political activity perpetuates and exaggerates existing biases, how political voice on the Internet replicates these inequalities--and more. In a true democracy, the preferences and needs of all citizens deserve equal consideration. Yet equal consideration is only possible with equal citizen voice.The Unheavenly Chorusreveals how far we really are from the democratic ideal and how hard it would be to attain it.

Lobbying Americatells the story of the political mobilization of American business in the 1970s and 1980s. Benjamin Waterhouse traces the rise and ultimate fragmentation of a broad-based effort to unify the business community and promote a fiscally conservative, antiregulatory, and market-oriented policy agenda to Congress and the country at large. Arguing that business's political involvement was historically distinctive during this period, Waterhouse illustrates the changing power and goals of America's top corporate leaders. Examining the rise of the Business Roundtable and the revitalization of older business associations such as the National Association of Manufacturers and the U.S. Chamber of Commerce, Waterhouse takes readers inside the mind-set of the powerful CEOs who responded to the crises of inflation, recession, and declining industrial productivity by organizing an effective and disciplined lobbying force. By the mid-1970s, that coalition transformed the economic power of the capitalist class into a broad-reaching political movement with real policy consequences. Ironically, the cohesion that characterized organized business failed to survive the ascent of conservative politics during the 1980s, and many of the coalition's top goals on regulatory and fiscal policies remained unfulfilled. The industrial CEOs who fancied themselves the \"voice of business\" found themselves one voice among many vying for influence in an increasingly turbulent and unsettled economic landscape. Complicating assumptions that wealthy business leaders naturally get their way in Washington,Lobbying Americashows how economic and political powers interact in the American democratic system.

Research Summary: The ability of innovative firms to create and capture value depends on innovations that are quickly and widely adopted. Yet, stakeholder concerns can establish important barriers to diffusion. We study the human capital aspect of this challenge and investigate whether innovative firms pay salary premiums to new hires with work experience from advocacy groups like Transparency International. We integrate strategic human capital with stakeholder theory and suggest that advocacy group experience creates signals for valuable human capital in terms of stakeholder knowledge and legitimacy transfers to innovative firms. Using matched data for 3,562 employees in Denmark, we find that new hires with advocacy group experience enjoy larger salary premiums at technologically leading firms, in occupations with direct stakeholder interaction, and for advocacy group top management. Managerial Summary: Innovation research is increasingly aware of the non‐technological factors behind successful innovations. Users, regulators, or public opinion can be benevolent supporters or stingy opponents of innovations. Employees with an understanding of the needs and sensitivities of societal stakeholders should therefore be valuable to innovative firms. We find this to be the case when innovative firms hire employees from advocacy groups representing such stakeholders (e.g., Transparency International). Such employees receive higher salaries than an otherwise comparable reference group. These findings indicate that recruiting needs of innovative firms reward stakeholder experience, not merely technological expertise. They demonstrate how firms can create value in the pursuit of the public interest. Further, advocacy groups emerge as an important career stage allowing individuals to develop credible signals for stakeholder expertise.

Background Cancer advocacy groups engage patients, families and caregivers in navigating the cancer landscape, with a focus on early detection/screening and providing psychosocial and financial support during and after treatment. These groups are influential among their communities, funders and policymakers. Objective We wished to understand perceptions of breast cancer advocacy group leaders on primary care's role in breast cancer survivorship care, given limited primary care engagement despite endorsement by the National Cancer Institute (NCI). Methods As part of a larger NCI‐funded study, we used purposive sampling to select leaders from a diversity of patient advocacy groups for in‐depth interviews (n = 9). After obtaining consent, interviews were conducted and recorded on Zoom, professionally transcribed, and analysed using an established immersion–crystallisation process to identify themes and patterns. Results We interviewed leaders (n = 9) from two local, three regional and four national advocacy groups, five of whom had personal experiences with breast cancer. These advocates emphasised that transitions away from the safety of oncology to primary care are difficult for patients. They felt patients with a history of breast cancer have unique and complex needs that are different from the standards of care found within primary care settings, and primary care clinicians are not adequately prepared to address these. In reflecting on the ideal role of primary care, they highlighted listening to patients, identifying issues and referring patients to appropriate specialists, but ultimately stressed that patients needed to advocate for themselves in the current healthcare environment. Conclusions Advocacy groups typically start as grass root efforts motivated by perceptions of inadequate support and care for cancer patients. As such, there is potential for advocacy groups to shape the conversation to improve collaboration between oncology and primary care by articulating and advocating for better primary care involvement in survivorship care. Patient or Public Contribution The project's steering committee included cancer survivors and cancer advocacy group leaders who provided feedback on the project design and made recommendations for people to interview. Steering committee retreats were later held after the completion of interviews to reflect on emerging findings and plan dissemination strategies. The study team included a cancer survivor and several members whose immediate family members had a history of cancer. They were actively engaged in the design, analysis and manuscript writing.

PurposeThe focus of SPINE20 is to develop evidence-based policy recommendations for the G20 countries to work with governments to reduce the burden of spine disease, and disability.MethodsOn September 17–18, 2021, SPINE20 held its annual meeting in Rome, Italy. Prior to the meeting, the SPINE20 created six proposed recommendations. These recommendations were uploaded to the SPINE20 website 10 days before the meeting and opened to the public for comments. The recommendations were discussed at the meeting allowing the participants to object and provide comments.ResultsIn total, 27 societies endorsed the following recommendations. SPINE20 calls upon the G20 countries: (1) to expand telehealth for the access to spine care, especially in light of the current situation with COVID-19. (2) To adopt value-based interprofessional spine care as an approach to improve patient outcomes and reduce disability. (3) To facilitate access and invest in the development of a competent rehabilitation workforce to reduce the burden of disability related to spine disorders. (4) To adopt a strategy to promote daily physical activity and exercises among the elderly population to maintain an active and independent life with a healthy spine, particularly after COVID-19 pandemic. (5) To engage in capacity building with emerging countries and underserved communities for the benefit of spine patients. (6) To promote strategies to transfer evidence-based advances into patient benefit through effective implementation processes.ConclusionsSPINE20’s initiatives will make governments and decision makers aware of efforts to reduce needless suffering from disabling spine pain through education that can be instituted across the globe.

Why do Internet, financial service, and beer commercials dominate Super Bowl advertising? How do political ceremonies establish authority? Why does repetition characterize anthems and ritual speech? Why were circular forms favored for public festivals during the French Revolution? This book answers these questions using a single concept: common knowledge. Game theory shows that in order to coordinate its actions, a group of people must form \"common knowledge.\" Each person wants to participate only if others also participate. Members must have knowledge of each other, knowledge of that knowledge, knowledge of the knowledge of that knowledge, and so on. Michael Chwe applies this insight, with striking erudition, to analyze a range of rituals across history and cultures. He shows that public ceremonies are powerful not simply because they transmit meaning from a central source to each audience member but because they let audience members know what other members know. For instance, people watching the Super Bowl know that many others are seeing precisely what they see and that those people know in turn that many others are also watching. This creates common knowledge, and advertisers selling products that depend on consensus are willing to pay large sums to gain access to it. Remarkably, a great variety of rituals and ceremonies, such as formal inaugurations, work in much the same way. By using a rational-choice argument to explain diverse cultural practices, Chwe argues for a close reciprocal relationship between the perspectives of rationality and culture. He illustrates how game theory can be applied to an unexpectedly broad spectrum of problems, while showing in an admirably clear way what game theory might hold for scholars in the social sciences and humanities who are not yet acquainted with it. In a new afterword, Chwe delves into new applications of common knowledge, both in the real world and in experiments, and considers how generating common knowledge has become easier in the digital age.

Do small but wealthy interest groups influence referendums, ballot initiatives, and other forms of direct legislation at the expense of the broader public interest? Many observers argue that they do, often lamenting that direct legislation has, paradoxically, been captured by the very same wealthy interests whose power it was designed to curb. Elisabeth Gerber, however, challenges that argument. In this first systematic study of how money and interest group power actually affect direct legislation, she reveals that big spending does not necessarily mean big influence. Gerber bases her findings on extensive surveys of the activities and motivations of interest groups and on close examination of campaign finance records from 168 direct legislation campaigns in eight states. Her research confirms what such wealthy interests as the insurance industry, trial lawyer associations, and tobacco companies have learned by defeats at the ballot box: if citizens do not like a proposed new law, even an expensive, high-profile campaign will not make them change their mind. She demonstrates, however, that these economic interest groups have considerable success in using direct legislation to block initiatives that others are proposing and to exert pressure on politicians. By contrast, citizen interest groups with broad-based support and significant organizational resources have proven to be extremely effective in using direct legislation to pass new laws. Clearly written and argued, this is a major theoretical and empirical contribution to our understanding of the role of citizens and organized interests in the American legislative process.

Background Over the past 30 years, the healthcare industry has increasingly turned its attention to rare diseases. Regulators have emphasized the need for clinical research in this area to be patient-centered. However, there is a lack of evidence concerning whether this need is actually met. In this paper, we aim to address this gap. Methods First, we describe the state of patient-centricity in clinical research in rare diseases based on a targeted literature review. Second, we discuss recommendations from scientific bodies on patient-reported outcome (PRO) measures in rare diseases. Third, we analyze data collected from EMA’s and FDA’s websites concerning rare disease labeling claims and data from Clinicaltrials.gov concerning the use of PRO measures in rare disease pivotal trials. Fourth, we perform an exhaustive literature review on the use of PRO measures in the pharmaceutical industry, including all phases of clinical research, observational/registry studies, and instrument development and validation. Results There is limited information on rare disease patient engagement in study design, recruitment, and retention. None of the initiatives describing methods for developing PRO measures in rare diseases provide the clear guidance clinical researchers need. Only 17.4% of orphan drug labels contain a PRO measure. Less than half of pivotal trials in orphan drugs have a PRO measure as a primary or a secondary endpoint. Although the number of publications about PRO measures in rare diseases has risen in the past fifteen years, our results indicate that substantial improvements are needed to achieve patient-centricity. Conclusions The nature and extent of patient engagement in rare disease research is under-documented. The current paradigm for developing and using PRO measures in clinical research is failing to meet the needs of rare disease patients. Not only are PROs rarely used as high-level endpoints in clinical trials or taken into account in labeling claims, they are also under-researched overall – there are too few measures for the multitude of rare diseases. We call for a clear guidance on patient engagement and suggest a realistic approach to the adaptation of PRO strategy to the specific context of clinical research in rare diseases.