Improving Patient Decision-Making in Health Care

Outlines regional variations within Minnesota in rates of patients with similar conditions receiving elective surgery, the concept of shared decision making, treatment choices for eight conditions, and steps for ensuring patients make informed decisions

Making the Case for Accelerated Withdrawal of Aducanumab

The controversial approval in June 2021 by the Food and Drug Administration (FDA) of aducanumab (marketed as Aduhelm), Biogen's monoclonal antibody for patients with Alzheimer's disease, raises significant concerns for the dementia field and drug approval process, considering its lack of adequate evidence for clinical efficacy, safety issues, and cost. On 15 December 2021, an international group of clinicians, basic science experts, psychological and social science researchers, lay people with lived experience of dementia, and advocates for public health met to discuss making a recommendation for whether aducanumab's approval should be withdrawn. Attendees considered arguments both in favor of and in opposition to withdrawal and voted unanimously to recommend that the FDA withdraw its approval for aducanumab and to support the Right Care Alliance's filing of a formal Citizen Petition to this effect

Why we need easy access to all data from all clinical trials and how to accomplish it

International calls for registering all trials involving humans and for sharing the results, and sometimes also the raw data and the trial protocols, have increased in recent years. Such calls have come, for example, from the Organization for Economic Cooperation and Development (OECD), the World Health Organization (WHO), the US National Institutes of Heath, the US Congress, the European Commission, the European ombudsman, journal editors, The Cochrane Collaboration, and several funders, for example the UK Medical Research Council, the Wellcome Trust, the Bill and Melinda Gates Foundation and the Hewlett Foundation

Seeding Science, Courting Conclusions: Reexamining the Intersection of Science, Corporate Cash, and the Law

Social scientists have expressed strong views on corporate influences over science, but most attention has been devoted to broad, Black/White arguments, rather than to actual mechanisms of influence. This paper summarizes an experience where involvement in a lawsuit led to the discovery of an unexpected mechanism: A large corporation facing a multibillion-dollar court judgment quietly provided generous funding to well-known scientists (including at least one Nobel prize winner) who would submit articles to "open," peer-reviewed journals, so that their "unbiased science" could be cited in an appeal to the Supreme Court. On balance, the corporation's most effective techniques of influence may have been provided not by overt pressure, but by encouraging scientists to continue thinking of themselves as independent and impartial

Measuring Up? End-of-Life Cancer Care in California

This research suggests that regions and hospitals where cancer patients are hospitalized more often in the last month of life, receive more aggressive treatment in their last month and spend relatively few days in hospice are signs that patients are receiving treatment that they do not want. The wide variation found in end-of-life cancer care can be explained only partly by patient preferences. Because differences in patients' age, sex, race, income and illness have been adjusted for, the variation that remains is caused by other factors, such as the availability of medical resources and the practice styles of health systems and clinicians. The research in this report has important implications for clinicians, hospitals, policymakers, and patients in California. Providers can see how their organizations and regions compare with others, and consider ways to provide less-costly care that is more closely aligned with patient wishes. Policymakers can identify regions and hospitals that are using promising approaches - as well as those that may benefit from more support in improving end-of-life care. Finally, patients can choose their caregivers and their site of care, and make their specific wishes known to their children

End-of-Life Care in California: You Don't Always Get What You Want

Californians frequently do not get the kind of care that they want at the end of their lives. This report documents research on end-of-life care for Medicare beneficiaries, and analyses it in light of what is known about Californian's preferences for care as they approach death. The research found sharp variation that cannot be explained by differences among patients in age, sex, or race

Overtreated: Why Too Much Care is as Bad as Too Little

Paper presented at the 1st International Symposium on Understanding Health Benefits and Risks: Empowering Patients and Citizens. Johns Hopkins University, Baltimore, Maryland. May 29, 2009Americans worry about not getting medical care they need, because they are uninsured or underinsured. They are far less likely to consider the risks of getting unnecessary care, which accounts for 20 to 30 percent of the care delivered in the U.S. Overtreatment puts patients at significant risk of medical error, adverse events, and suffering unnecessary pain and discomfort, especially at the end of life. Overtreatment is also costing us between $600 and$800 billion annually. What are the factors that encourage the delivery of unnecessary care? How can we redesign the system to give patients what they need, when they need it, and no more? And will health care reform efforts in Washington address this issue