The goal of this article is to understand the value of data and to call for efforts to explore improved data sharing and collection among local, state, and federal agencies. It discusses the data available and existing barriers to sharing it. It also looks at examples of data sharing initiatives and analysis, such as mapping and visualization tools. The article then examines relevant regulations and calls for reforms. Finally, the article considers objections, including privacy interests, data security, and the costs and benefits of data sharing initiatives.

Many observers have argued that the US health care system could be more efficient, and achieve better outcomes if providers focused more on improving the community's health, not just the welfare of individual patients. The passage of the Affordable Care Act (ACA) in 2010 seemed to herald the promise of such reforms, and greater integration of the health care and public systems. In this article, we reassess the quest for integration, a quest we call the “integration project.” After examining the modest steps taken so far toward integration, we consider some conceptual barriers to integration as well as some of the risks it might portend for the public health system. Our assessment contributes to wide-ranging debates among public health advocates, practitioners, and policymakers as to the health care system's role in protecting public health, and how the public health system can best be organized to meet expected population health challenges.

To improve the value of pharmaceutical spending, some manufacturers and payers have introduced outcomes-based contracts, where rebates are tied to specified outcomes. We reviewed the literature and interviewed key experts to assess these contracts' potential to slow pharmaceutical spending. We found that while outcomes-based contracts are increasingly common in the US, they are still limited by multiple factors — including the lack of meaningful outcomes data. Moreover, there is no evidence to date that they slow pharmaceutical spending or increase access. Experts favored having CMS test and rigorously evaluate this model to achieve a better understanding of the implications.

The rising cost of the opioid antagonist and overdose reversal agent naloxone is an urgent public health problem. The recent and dramatic price increase of Evzio, a naloxone auto-injector produced by Kaléo, shows how pharmaceutical manufacturers entering the naloxone marketplace rely on market exclusivity guaranteed by the patent system to charge prices at what the market can bear, which can restrict access to life-saving medication. We argue that 28 U.S.C. § 1498, a section of the federal code that allows the government to use patent-protected products for its own purposes in exchange for reasonable compensation, could be used to procure generic naloxone auto-injectors, or at least bring Kaléo to the negotiating table. Precedent exists for the use of § 1498 to procure pharmaceuticals, and it could give meaning to the federal government's recent declaration of a public health emergency around the opioid epidemic, discourage new market entrants from charging exorbitant prices, and yield important public health benefits.

This paper attempts to bring to the attention of the readers a concept that broadens ethical considerations for Alzheimer's disease research. We propose we move away from the ethical paradigm that focuses on avoidance of coercion for participation in studies as well as privacy and safety to a more inclusive paradigm that will not only include the principles outlined above but will also guarantee access to new treatments for individuals that participate in research and other members of society. Specifically, if the research being performed results in a new treatment for Alzheimer's disease, would the individuals participating in the research and other members of their community have access to and benefit from these treatments, given the availability of financial and other resources in the society that will allow for the implementation of these treatments. This paper will propose a model that will facilitate the achievement of these broader ethical considerations.

Previously diagnosed by symptoms alone, Alzheimer's disease is now also defined by measures of amyloid and tau, referred to as “biomarkers.” Biomarkers are detectible up to twenty years before symptoms present and open the door to predicting the risk of Alzheimer's disease. While these biomarkers provide information that can help individuals and families plan for long-term care services and supports, insurers could also use this information to discriminate against those who are more likely to need such services. In this article, we evaluate whether state laws prohibit long-term care insurers from making discriminatory or unfair underwriting and coverage decisions based Alzheimer's disease biomarkers status. We report data demonstrating that current state laws do not provide meaningful protections from discrimination by long-term care insurers based on biomarker information.

This article is about the recent and profound changes in the conceptualization of dementia, especially the turn towards prevention. The main argument is that more attention needs to be paid to “situated prevention” — the framing of internationally circulating data on the “new dementia” in different contexts. After introducing some of the more problematic issues related to the “new dementia,” a first comparison of major preventive clinical trials in Europe and in North America will be provided. The major insight stemming from situating the global message of preventing dementia is recognition of the responsibility researchers and policy makers bear with respect to the implicit and potential moral narratives in emerging scientific landscapes.

Dance, as aesthetic self-expression, is a unique arts-based program that combines the physical benefits of exercise with psychosocial therapeutic benefits. While dance has also been shown to support empowerment, meaningful self-expression, and pleasurable experience, it is rarely adopted to support these aspects of engagement in the context of dementia care. The instrumental reduction of dance to its application as a therapeutic tool can be traced to the contemporary movement towards cognitive science with an emphasis on embodied cognition. This has effectively elided a consideration of how the body itself, separate and apart from cognition, could be a source of intelligibility, inventiveness, and creativity. We argue for the need to broaden the therapeutic model of dance to more fully support embodied and creative self-expression by persons living with dementia. To achieve this, we explore how a relational model of citizenship that recognizes corporeality and relationality as fundamental to human existence brings a new and critical dimension to understanding the importance of dance in the context of dementia. Drawing on this model, we articulate a new kind of ethic characterized by a pre-reflective intercorporeal sensibility that requires the mobilization of public structures and practices to cultivate a relational environment for individuals living with dementia that supports human flourishing.

The objective of this study is to evaluate if use of a patient decision aid (PDA), when choosing between a repeat cesarean or a trial of labor after a cesarean (TOLAC), reduces medical liability exposure. The authors conclude that use of a PDA conferred liability protection when potential jurors were presented with a hypothetical malpractice claim against an obstetrician following a TOLAC.

When the HPV vaccine was released over a decade ago, there was intense opposition to mandating the vaccine, including among bioethics and legal scholars. Some of the original concerns are now obsolete, while other objections continue to present an obstacle to mandating the vaccine. This essay responds to earlier critiques of mandatory HPV vaccination and offers a series of arguments in support of a vaccine mandate. The first section briefly addresses initial concerns that are no longer relevant. The second section makes the ethical case for mandating HPV vaccination, based on three principles: 1) the best interests of children, 2) solidarity, and 3) health equity. The final section addresses concerns related to implementation of the vaccine, including the validity of linking vaccination to school entry. The essay concludes that we have a moral imperative to protect children from the leading cause of cervical cancer, and that mandating HPV vaccination is the best way to ensure that children of all backgrounds receive the vaccine before they have been exposed to the virus.

The paper outlines the policy context and summarizes the numerous policy issues that AD raises from the more generic to the unique. It posits that strong public fears of AD and its future prevalence projections and costs, raise increasingly difficult policy dilemmas. After reviewing the costs in human lives and money and discussing the latest U.S. policy initiatives, the paper presents two policy areas as examples the demanding policy decisions we face. The first focuses on the basic regulatory function of protecting the public from those who would exploit these fears. The second centers on the well-debated issues of advance directives and euthanasia that surround AD. Although more dialogue, education and research funding are needed to best serve the interests of AD patients and families as well as society at large, this will be challenging because of the strong feelings and divisions AD engenders.

Americans who are afraid of living for many years with Alzheimer's might seek a way to end their lives early, when their dementia has just entered the moderate phase. There is no legal process for doing so. In this paper I argue that advance directives, in particular, are not a legal solution for those who prefer to die rather than suffer years of dementia. The problem is that an advance directive only works to hasten death when there is a life-threatening illness for which one can refuse treatment; more often than not, Alzheimer's kills the self long before it kills the body.

State law requirements for health care advance directive documents were reviewed in every state and the District of Columbia to determine whether they are consistent and/or flexible enough to permit the utilization by the public of “universal” advance directive forms, specifically a health care power of attorney, that would be valid under every state's advance directive statutes. Such documents would have to overcome the wide variability of state legal formalities for validity. If this could be accomplished, the public would benefit from having a variety of multi-state or truly universal forms available that could be used with confidence in their validity.

The review found that a basic, multi-state health care power of attorney appears to be feasible in 41 States and the District of Columbia, compared to 36 states and the District in 2005. Only nine states prevent recognition of a truly universal form. Some barriers were surmountable, including differing agent and witness requirements, execution requirements, and effectiveness triggers. Other barriers were insurmountable, including mandatory forms, mandatory disclosures, and decision-specific language requirements. The strategies identified for overcoming some barriers can be used by lawyers in drafting true multi-state directives. More importantly, states should simplify state advance directive laws to facilitate a more meaningful communication model of advance care planning.

Both law and medicine rely on self-regulation and codes of professionalism to ensure duties are performed in a competent, ethical manner. Unlike physicians, however, judges are lawyers themselves, so judicial oversight is also self-regulation. As previous literature has highlighted, the hesitation to report a cognitively-compromised judge has resulted in an “opensecret” amongst lawyers who face numerous conflicts of interest.

Through a case study involving a senior judge with severe cognitive impairment, this article considers the unique ethical dilemmas that cognitive specialists may encounter when navigating duties to patient, society, and the medical profession, without clear legal guidance.

Systemic self-regulatory inadequacies in the legal profession are addressed, as well as challenges that arise when trying to preserve the trust and dignity of an incapacitated patient who must fulfill special duties to society.

Ultimately, because of their unique neurological expertise and impartial assessments, we submit that allowing cognitive specialists to submit their assessments to an internal judiciary board may act as an additional check and balance to ensure the fair and competent administration of justice.

The author recounts her experience as an Alzheimer's care-giver to her mother, stressing the value of her professional background in theater.