Amy Price

Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study

Objectives While documented plans for patient and public involvement (PPI) in research are required in many grant applications, little is known about how frequently PPI occurs in practice. Low levels of reported PPI may mask actual activity due to limited PPI reporting requirements. This research analysed the frequency and types of reported PPI in the presence and absence of a journal requirement to include this information. Design and setting A before and after comparison of PPI reported in research papers published in The BMJ before and 1 year after the introduction of a journal policy requiring authors to report if and how they involved patients and the public within their papers. Results Between 1 June 2013 and 31 May 2014, The BMJ published 189 research papers and 1 (0.5%) reported PPI activity. From 1 June 2015 to 31 May 2016, following the introduction of the policy, The BMJ published 152 research papers of which 16 (11%) reported PPI activity. Patients contributed to grant applications in addition to designing studies through to coauthorship and participation in study dissemination. Patient contributors were often not fully acknowledged; 6 of 17 (35%) papers acknowledged their contributions and 2 (12%) included them as coauthors. Conclusions Infrequent reporting of PPI activity does not appear to be purely due to a failure of documentation. Reporting of PPI activity increased after the introduction of The BMJ’s policy, but activity both before and after was low and reporting was inconsistent in quality. Journals, funders and research institutions should collaborate to move us from the current situation where PPI is an optional extra to one where PPI is fully embedded in practice throughout the research process.

Evidence-based medicine meets person-centred care: a collaborative perspective on the relationship.

In a recent list-serve, the way forward for evidence-based medicine was discussed. The purpose of this paper was to share the reflections and multiple perspectives discussed in this peer-to-peer encounter and to invite the reader to think with a mind for positive change in the practice of health care. Let us begin with a simple question. What if we dared to look at evidence-based medicine (EBM) and informed shared decision making like two wheels on a bike? They both need to be full of substance, well connected, lubricated and working in balance, propelled and guided by a competent driver, with good vision to get the bike where we want it to go. We need all the tools in the toolkit for the bike to stay operational and to meet the needs of the driver. By the same rationale, evidence alone is necessary but not sufficient for decision making; values are necessary and if neglected, may default to feelings based on social pressures and peer influence. Medical decisions, even shared ones, lack focus without evidence and application. Just as a bike may need a tune up from time to time to maintain optimal performance, EBM may benefit from a tune up where we challenge ourselves to move away from general assumptions and traditions and instead think clearly about the issues we face and how to ask well-formed, specific questions to get the answers to meet the needs we face in health care.

Delirium from the gliocentric perspective

Delirium is an acute state marked by disturbances in cognition, attention, memory, perception, and sleep-wake cycle which is common in elderly. Others have shown an association between delirium and increased mortality, length of hospitalization, cost, and discharge to extended stay facilities. Until recently it was not known that after an episode of delirium in elderly, there is a 63% probability of developing dementia at 48 months compared to 8% in patients without delirium. Currently there are no preventive therapies for delirium, thus elucidation of cellular and molecular underpinnings of this condition may lead to the development of early interventions and thus prevent permanent cognitive damage. In this article we make the case for the role of glia in the pathophysiology of delirium and describe an astrocyte-dependent central and peripheral cholinergic anti-inflammatory shield which may be disabled by astrocytic pathology, leading to neuroinflammation and delirium. We also touch on the role of glia in information processing and neuroimaging.

The Obesity–Impulsivity Axis: Potential Metabolic Interventions in Chronic Psychiatric Patients

Pathological impulsivity is encountered in a broad range of psychiatric conditions and is thought to be a risk factor for aggression directed against oneself or others. Recently, a strong association was found between impulsivity and obesity which may explain the high prevalence of metabolic disorders in individuals with mental illness even in the absence of exposure to psychotropic drugs. As the overlapping neurobiology of impulsivity and obesity is being unraveled, the question asked louder and louder is whether they should be treated concomitantly. The treatment of obesity and metabolic dysregulations in chronic psychiatric patients is currently underutilized and often initiated late, making correction more difficult to achieve. Addressing obesity and metabolic dysfunction in a preventive manner may not only lower morbidity and mortality but also the excessive impulsivity, decreasing the risk for aggression. In this review, we take a look beyond psychopharmacological interventions and discuss dietary and physical therapy approaches.

Proteomic and epigenomic markers of sepsis-induced delirium (SID).

In elderly population sepsis is one of the leading causes of intensive care unit (ICU) admissions in the United States. Sepsis-induced delirium (SID) is the most frequent cause of delirium in ICU (Martin et al., 2010). Together delirium and SID represent under-recognized public health problems which place an increasing financial burden on the US health care system, currently estimated at 143–152 billion dollars per year (Leslie et al., 2008). The interest in SID was recently reignited as it was demonstrated that, contrary to prior beliefs, cognitive deficits induced by this condition may be irreversible and lead to dementia (Pandharipande et al., 2013; Brummel et al., 2014). Conversely, it is construed that diagnosing SID early or mitigating its full blown manifestations may preempt geriatric cognitive disorders. Biological markers specific for sepsis and SID would facilitate the development of potential therapies, monitor the disease process and at the same time enable elderly individuals to make better informed decisions regarding surgeries which may pose the risk of complications, including sepsis and delirium. This article proposes a battery of peripheral blood markers to be used for diagnostic and prognostic purposes in sepsis and SID. Though each individual marker may not be specific enough, we believe that together as a battery they may achieve the necessary accuracy to answer two important questions: who may be vulnerable to the development of sepsis, and who may develop SID and irreversible cognitive deficits following sepsis?

Perspectives on involvement in the peer-review process: surveys of patient and public reviewers at two journals

Objective In 2014/2015, The BMJ and Research Involvement and Engagement (RIE) became the first journals to routinely include patients and the public in the peer review process of journal articles. This survey explores the perspectives and early experiences of these reviewers. Design A cross-sectional survey. Setting and participants Patient and public reviewers for The BMJ and RIE who have been invited to review. Results The response rate was 69% (157/227) for those who had previously reviewed and 31% (67/217) for those who had not yet reviewed. Reviewers described being motivated to review by the opportunity to include the patient voice in the research process, influence the quality of the biomedical literature and ensure it meets the needs of patients. Of the 157 who had reviewed, 127 (81%) would recommend being a reviewer to other patients and carers. 144 (92%) thought more journals should adopt patient and public review. Few reviewers (16/224, 7%) reported concerns about doing open review. Annual acknowledgement on the journals’ websites was welcomed as was free access to journal information. Participants were keen to have access to more online resources and training to improve their reviewing skills. Suggestions on how to improve the reviewing experience included: allowing more time to review; better and more frequent communication; a more user-friendly process; improving guidance on how to review including videos; improving the matching of papers to reviewers’ experience; providing more varied sample reviews and brief feedback on the usefulness of reviews; developing a sense of community among reviewers; and publicising of the contribution that patient and public review brings. Conclusions Patient and public reviewers shared practical ideas to improve the reviewing experience and these will be reviewed to enhance the guidance and support given to them.

Ferrosenescence: The iron age of neurodegeneration?

Aging has been associated with iron retention in many cell types, including the neurons, promoting neurodegeneration by ferroptosis. Excess intracellular iron accelerates aging by damaging the DNA and blocking genomic repair systems, a process we define as ferrosenescence. Novel neuroimaging and proteomic techniques have pinpointed indicators of both iron retention and ferrosenescence, allowing for their early correction, potentially bringing prevention of neurodegenerative disorders within reach. In this review, we take a closer look at the early markers of iron dyshomeostasis in neurodegenerative disorders, focusing on preventive strategies based on nutritional and microbiome manipulations.

Creating a database of internet-based clinical trials to support a public-led research programme: A descriptive analysis

Background Online trials are rapidly growing in number, offering potential benefits but also methodological, ethical and social challenges. The International Network for Knowledge on Well-being (ThinkWell™) aims to increase public and patient participation in the prioritisation, design and conduct of research through the use of technologies. Objective We aim to provide a baseline understanding of the online trial environment, determining how many trials have used internet-based technologies; how they have been used; and how use has developed over time. Methods We searched a range of bibliographic databases to March 2015, with no date limits, supplemented by citation searching and references provided by experts in the field. Results were screened against inclusion and exclusion criteria, and included studies mapped against a number of key dimensions, with key themes developed iteratively throughout the process. Results We identified 1992 internet-based trials to March 2015. The number of reported studies increased substantially over the study timeframe. The largest number of trials were conducted in the USA (49.7%), followed by The Netherlands (10.2%); Australia (8.5%); the United Kingdom (5.8%); Sweden (4.6%); Canada (4%); and Germany (2.6%). South Korea (1.5%) has the highest number of reported trials for other continents. There is a predominance of interventions addressing core public health challenges including obesity (8.6%), smoking cessation (5.9%), alcohol abuse (7.7%) and physical activity (10.2%); in mental health issues such as depression (10.9%) and anxiety (5.6%); and conditions where self-management (16.6%) or monitoring (8.1%) is a major feature of care. Conclusions The results confirm an increase in the use of the internet in trials. Key themes have emerged from the analysis and further research will be undertaken in order to investigate how the data can be used to improve trial design and recruitment, and to build an open access resource to support the public-led research agenda.

comparative effectiveness research collaboration and precision medicine

Knowing and managing the cross cultural and multi-disciplinary benefits and limitations of comparative effectiveness research (CER) will be the key component in building a strong foundation for the proof of concept in precision medicine.Unprecedented funding for CER is now available but this often favors national applicants even though the research is completed in other nations. There is a spill-over effect into low and middle income countries (LMIC), where device manufacturers, pharmaceutical companies, and regenerative technology corporations are investing in for the benefits of reduced site costs, supplies, and faster turn around times.Corporations ostensibly enjoy the opportunity to work in relative obscurity, thus protecting the proprietary aspects of development in a more lenient regulatory milieu with reduced ethical scrutiny. These organizations are clearly enjoying a benefit, but the question remains: how can research quality and medical benefit for the LMIC nations be enriched by these collaborations to improve the host nation’s medical education, research program and national health care?

Neurodegeneration Behind Bars: from Molecules to Jurisprudence

It is estimated 40,000 inmates with dementia are currently incarcerated in U.S. prisons with forecasted increases topping a quarter of a million persons by 2050 (1). The reasons for the graying of prison population are multiple, including longer incarceration periods, mandatory prison sentences, and an increase in the number of older first offenders (2). It is also believed that people in prison age at a faster rate than the general population (3). The category of older first offenders has increased steadily over the past two decades. According to the Human Rights Watch report, the number of persons over 60 years of age entering state prisons as new court commitments grew by 109% between 1995 and 2009 (4). Recent studies demonstrate that 54% of bvFTD patients commit criminal acts (5) and since this condition represents 5–6% of all dementias, it is possible that it accounts for the large numbers of older first offenders entering prisons. Moreover, up to 51% of bvFTD patients are misdiagnosed at the initial evaluation because the symptoms resemble psychiatric conditions and are missed by routine cognitive testing (6). In this opinion article, we emphasize a multidisciplinary approach to bvFTD; we believe that input from disciplines such as neurobiology, psychology, psychiatry, forensic psychiatry, and jurisprudence could help us comprehend better this complex disorder.