Barbara K. Redman

Empirical developments in retraction

This study provides current data on key questions about retraction of scientific articles. Findings confirm that the rate of retractions remains low but is increasing. The most commonly cited reason for retraction was research error or inability to reproduce results; the rate from research misconduct is an underestimate, since some retractions necessitated by research misconduct were reported as being due to inability to reproduce. Retraction by parties other than authors is increasing, especially for research misconduct. Although retractions are on average occurring sooner after publication than in the past, citation analysis shows that they are not being recognised by subsequent users of the work. Findings suggest that editors and institutional officials are taking more responsibility for correcting the scientific record but that reasons published in the retraction notice are not always reliable. More aggressive means of notification to the scientific community appear to be necessary.

Responsibility for Control: Ethics of Patient Preparation for Self-Management of Chronic Disease

Patient self-management (SM) of chronic disease is an evolving movement, with some forms documented as yielding important outcomes. Potential benefits from proper preparation and maintenance of patient SM skills include quality care tailored to the patients preferences and life goals, and increase in skills in problem solving, confidence and success, generalizable to other parts of the patients life. Four central ethical issues can be identified. 1) insufficient patient/family access to preparation that will optimize their competence to SM without harm to themselves, 2) lack of acknowledgement that an ethos of patient empowerment can mask transfer of responsibility beyond patient/family competency to handle that responsibility, 3) prevailing assumptions that preparation for SM cannot result in harm and that its main purpose is to deliver physician instructions, and 4) lack of standards for patient selection, which has the potential to exclude individuals who could benefit from learning to SM. Technology assessment offers one framework through which to examine available data about efficacy of patient SM and to answer the central question of what conditions must be put in place to optimize the benefits of SM while assuring that potential harms are controlled.

Off with their heads: the need to criminalize some forms of scientific misconduct.

Improvement in policy for the management of scientific misconduct has been slow. While assurance of due process at the ORI level is now in place, similar protections at the institutional level and institutional responsibility for further oversight and a workplace where the responsible conduct of research can be practiced have not yet been addressed. In contrast, policy regarding human subject protection has evolved rapidly to reflect firmer norms, with decisive priority given to subject protection over scientific or social needs. Perhaps because scientific misconduct policy has the potential to harm the careers of individual scientists and harms to individual subjects are thought to be indirect, the scientific community has been successful in blocking every move toward testing more rigorous regulation. The mantras that scientists can discipline their own, and the price of competitive science is some level of scientific misconduct are not persuasive. The standards by which science is judged should not be an exception to those governing others who deal with the publics money and have a duty to the public interest.

Accountability for patient self-management of chronic conditions; ethical analysis and a proposal:

Patient self-management (PSM) of varying portions of therapy for chronic illness is expanding. However, several current conditions of practice are ethically problematic. Standards remain process-oriented, and accountability for patient outcomes and quality of practice of both patient and provider is diffuse. PSM carries important benefits but largely unmonitored potential harms. Also, access to preparation for safe PSM appears to be skewed in favour of high socio-economic classes. This condition persists even though available evidence supports the conclusion that less advantaged patients with poor disease outcomes can be taught to self-manage, albeit they require more intensive and prolonged interventions. Routine clinical use of well-validated measurement instruments could serve to develop evidence-based standards of PSM, quality improvement and effective public policy. Development of a standard dataset would facilitate description of the effectiveness of existing programmes and comparison across programmes. Such reform will require investment in the development of instruments that measure patient ability to make sound clinical judgements and sustain PSM over changed disease and social conditions. It will take advantage of modern psychometric theory, which is increasingly necessary for building the empirical base for evidence-based healthcare.

Patient self management: potential harms to control.

Patient self management (PSM) of chronic diseases in partnership with healthcare professionals offers many potential benefits – superior control of the disease and its symptoms and thus decreased exacerbations requiring hospitalization, opportunity to integrate disease management into one’s lifestyle so as to optimize personal and family well-being, and development of knowledge, skills and self efficacy (SE) by which to manage other healthcare problems. Potential harms are rarely considered or detected through screening, although some are reversible and some are preventable through proper design of support services. The purpose of this commentary is to outline harms which, even though described anecdotally by clinicians, should be considered to be hypothetical and to be verified. The overall goal is to manage them to maintain a positive benefit/harm ratio from PSM. Harm can be defined as injury to one’s central and legitimate interests. PSM of chronic disease is an individual’s ability to detect and manage symptoms, treatment, physical and psychological consequences and lifestyle changes inherent in living with a chronic condition. Potential harms are organized by those largely affecting individuals, and those operating at the population level.

Evaluating the Oversight of Scientific Misconduct

The office of Research Integrity has proposed a new definition of scientific misconduct that will substantively reduce the federal governments role of oversight of scientific practices. The standard is being changed despite the lack of evidence about the effects of current policies or understanding of why research misconduct occurs, how it can be detected and prevented, and the nature and effectiveness of sanctions. Given this lack of knowledge and the perception that the integrity of science is falling, we believe it would be unwise for the academic and scientific community to adopt this new standard.

When is patient self-management of chronic disease futile?

As a tsunami of chronic disease rolls across the world, governments seek ways to control its disastrous impact on health and economic effects, adopting, as part of a package of reforms, patient self-management (PSM) as policy and as an altered norm for how healthcare should be delivered. PSM has been defined as the ability to detect and manage the symptoms and treatment, physical and psychological consequences, and lifestyle changes inherent in living with chronic condition(s), which a particular patient may be able to do to a greater or lesser extent. PSM has been adopted for many chronic diseases and is being extended to others. This broader dissemination requires consideration of a variety of currently unexplored ethical issues, including patient harm from inadequate preparation and resistance from some health professionals. Justifiable amounts of investment in PSM for individual patients with single or multiple chronic diseases are among the most salient ethical issues. Currently, many patients whose chronic diseases could be managed at least in part by PSM do not receive preparation and support for this role, limiting their ability to choose PSM and the benefits it can bring. This situation could be attributed to payment policies and other priorities reflecting the culture of medicine instead of to a reasoned ethical position. Advocacy for PSM requires an understanding of futility as a treatment concept. This article presents a definition of futility, the background conditions/assumptions necessary to decide that PSM will probably be ineffective and therefore approaches futility, and common situations in PSM that do and do not fit the definition of futility.

Effects of Findings of Scientific Misconduct on Postdoctoral Trainees

Background: In an earlier study, we described the impact of formal misconduct determinations on established scientists’ careers, showing that many retained scientific careers, and more than half (51%) continued to publish at least one paper per year after their cases were decided. Here, we extend our study to examine the ramifications of final misconduct findings by the Office of Research Integrity (ORI) on the careers of postdoctoral fellows. Methods: We tracked publication histories and attempted to track down all postdoctoral trainees found by ORI to have committed misconduct, and attempted to interview them about their experiences. Results: Trainees found to have committed misconduct between 1993 and 2007 whom we could trace were less likely to continue to publish than more established scientists, with only 11% publishing more than one paper per year after their misconduct determinations. Our assessment is constrained by our inability to reliably trace postdoctoral fellows, reflecting the fact that a majority of U.S. postdocs are from other countries. Conclusions: Because of concern about the fairness of severe punishment of trainees, the U.S. Office of Research Integrity appears to be shifting from funding debarments toward requiring education, mentorship, and oversight for trainees, which may enhance the likelihood of rehabilitation. Whether this policy succeeds remains to be seen.

Ethics of Patient Education and How Do We Make it Everyone’s Ethics

Patient education has long been central to nursings philosophy of practice, and, because of this commitment, nurses in all practice settings have been deeply distressed with the careless and generally incomplete manner in which it is practiced in the health care system. This article examines the ethical underpinning of this distress and of this neglect in patient education and what actions nurses can take to correct this situation.

PATIENT EDUCATION SERVICES AS OPPRESSOR

The education provided to women patients has been used historically to deliver messages of social and medical control. I suggest ethical standards of practice to tilt the balance toward use of education to serve womens perceived needs. Specific steps include standards and guidelines that specifically address appropriate gender differences in educational messages, regular elicitation from women of educational needs and satisfaction with educational services, and research that specifically tests the impact of patient education services on women and on men. More broadly, patient education must be legitimated as an essential service for which providers and institutions are accountable, and the predominately nonphysician providers who deliver it must be empowered to challenge current practice. Current work on health care as a gendered system suggests that patient education practice can rid itself of only some of the gender bias that exists.