An Innovative Lab-Based Training Program to Help Patient Groups Understand Their Disease and the Research Process

Genuine partnership between patient groups and medical experts is important but challenging. Our training program meets this challenge by organizing hands-on, lab-based training sessions for members of patient groups. These sessions allow “trainees” to better understand their disease and the biomedical research process, and strengthen links between patients and local researchers. Over the past decade, we and our partner institutes have received more than 900 French patients, with the participation of over 60 researchers and clinicians.

This Community Page is part of the "Public Engagement in Science" Series.

     

Mapping Public Engagement with Research in a UK University

Notwithstanding that ‘public engagement’ is conceptualised differently internationally and in different academic disciplines, higher education institutions largely accept the importance of public engagement with research. However, there is limited evidence on how researchers conceptualise engagement, their views on what constitutes engagement and the communities they would (or would not) like to engage with. This paper presents the results of a survey of researchers in the Open University that sought to gather data to fill these gaps. This research was part of an action research project designed to embed engagement in the routine practices of researchers at all levels. The findings indicate that researchers have a relatively narrow view of public engagement with research and the communities with which they interact. It also identified that very few strategically evaluate their public engagement activities. We conclude by discussing some of the interventions we have introduced with the aim of broadening and deepening future researcher engagement.     

Image-based modeling for better understanding and assessment of atherosclerotic plaque progression and vulnerability: Data,modeling, validation,uncertainty and predictions

Medical imaging and image-based modeling have made considerable progress in recent years in identifying atherosclerotic plaque morphological and mechanical risk factors which may be used in developing improved patient screening strategies. However, a clear understanding is needed about what we have achieved and what is really needed to translate research to actual clinical practices and bring benefits to public health. Lack of in vivo data and clinical events to serve as gold standard to validate model predictions is a severe limitation. While this perspective paper provides a review of the key steps and findings of our group in image-based models for human carotid and coronary plaques and a limited review of related work by other groups, we also focus on grand challenges and uncertainties facing the researchers in the field to develop more accurate and predictive patient screening tools.     

Claude Bernard Distinguished Lecture. Becoming a truly helpful teacher: considerably more challenging, and potentially more fun, than merely doing business as usual

Few medical faculty members are adequately prepared for their instructional responsibilities. Our educational traditions were established before we had research-based understandings of the teaching-learning process and before brain research began informing our understandings of how humans achieve lasting learning. Yet, there are several advantages you may have. If your expertise is at one of the frontiers of human biology, your teaching can be inherently fascinating to aspiring health professionals. If your work has implications for human health, you have another potential basis for engaging future clinicians. And, thanks to Claude Bernard's influence, you likely are "process oriented," a necessary mindset for being an effective teacher. There are also challenges you may face. Your medical students will mostly become clinicians. Unless you can help them see connections between your offerings and their future work, you may not capture and sustain their interest. To be effective, teachers, like clinicians, need to be interactive, make on-the-spot decisions, and be "emotional literate." If you aren't comfortable with these demands, you may have work to do toward becoming a truly helpful teacher. Program changes may be needed. Might your program need to change 1) from being adversarial and controlling to being supportive and trust based or 2) from mainly dispensing information to mainly asking and inviting questions? In conclusion, making changes toward becoming a truly helpful teacher can bring benefits to your students while increasing your sense of satisfaction and fulfillment as a teacher. If you choose to change, be gentle with yourself, as you should be when expecting your students to make important changes.     

From a crisis to an opportunity: Eight insights for doing science in the COVID‐19 era and beyond

The COVID‐19 crisis has forced researchers in Ecology to change the way we work almost overnight. Nonetheless, the pandemic has provided us with several novel components for a new way of conducting science. In this perspective piece, we summarize eight central insights that are helping us, as early career researchers, navigate the uncertainties, fears, and challenges of advancing science during the COVID‐19 pandemic. We highlight how innovative, collaborative, and often Open Science‐driven developments that have arisen from this crisis can form a blueprint for a community reinvention in academia. Our insights include personal approaches to managing our new reality, maintaining capacity to focus and resilience in our projects, and a variety of tools that facilitate remote collaboration. We also highlight how, at a community level, we can take advantage of online communication platforms for gaining accessibility to conferences and meetings, and for maintaining research networks and community engagement while promoting a more diverse and inclusive community. Overall, we are confident that these practices can support a more inclusive and kinder scientific culture for the longer term.     

DISPUTING THE ETHICS OF RESEARCH: THE CHALLENGE FROM BIOETHICS AND PATIENT ACTIVISM TO THE INTERPRETATION OF THE DECLARATION OF HELSINKI IN CLINICAL TRIALS

In this paper we argue that the consensus around normative standards for the ethics of research in clinical trials, strongly influenced by the Declaration of Helsinki, is perceived from various quarters as too conservative and potentially restrictive of research that is seen as urgent and necessary. We examine this problem from the perspective of various challengers who argue for alternative approaches to what ought or ought not to be permitted. Key themes within this analysis will examine these claims and argue they have implications for the interests of the research subject, research governance and regulation. Using our work with TREAT‐NMD, the neuromuscular clinical trials network, we posit that there is a place for advancing the discourse of moral rights and moral duties in the context of research, especially from the perspective of patients and their families, and for including the politics of patient activism and empowerment. At the same time we remain vigilant to the danger that the therapeutic misconception and other serious vulnerabilities for the patient population in clinical trials, are at risk of being overlooked.     

DONATING FRESH VERSUS FROZEN EMBRYOS TO STEM CELL RESEARCH: IN WHOSE INTERESTS?

Some stem cell researchers believe that it is easier to derive human embryonic stem cells from fresh rather than frozen embryos and they have had in vitro fertilization (IVF) clinicians invite their infertility patients to donate their fresh embryos for research use. These embryos include those that are deemed 'suitable for transfer' (i.e. to the woman's uterus) and those deemed unsuitable in this regard. This paper focuses on fresh embryos deemed suitable for transfer - hereafter 'fresh embryos'- which IVF patients have good reason not to donate. We explain why donating them to research is not in the self-interests specifically of female IVF patients. Next, we consider the other-regarding interests of these patients and conclude that while fresh embryo donation may serve those interests, it does so at unnecessary cost to patients' self-interests. Lastly, we review some of the potential barriers to the autonomous donation of fresh embryos to research and highlight the risk that female IVF patients invited to donate these embryos will misunderstand key aspects of the donation decision, be coerced to donate, or be exploited in the consent process. On the basis of our analysis, we conclude that patients should not be asked to donate their fresh embryos to stem cell research.     

Shared Decision Making in Patients with Stable Coronary Artery Disease: PCI Choice

Background

Percutaneous coronary intervention (PCI) and optimal medical therapy (OMT) are comparable, alternative therapies for many patients with stable angina; however, patients may have misconceptions regarding the impact of PCI on risk of death and myocardial infarction (MI) in stable coronary artery disease (CAD).

Methods and Results

We designed and developed a patient-centered decision aid (PCI Choice) to promote shared decision making for patients with stable CAD. The estimated benefits and risks of PCI+OMT as compared to OMT were displayed in a decision aid using pictographs with natural frequencies and text. We engaged patients, clinicians, health service researchers, and designers with over 20 successive iterations of the decision aid, which were field tested during real-world clinical encounters involving clinicians and patients. The decision aid is intended to facilitate knowledge transfer, deliberation based on patient values and preferences, and shared decision making.

Conclusions

We describe the methods and outcomes of the design and development of a decision aid (PCI Choice) to promote shared decision making between clinicians and patients regarding the choice of PCI+OMT vs. OMT for treatment of stable CAD. We will evaluate the impact of PCI Choice on patient knowledge, decisional conflict, participation in decision-making, and treatment choice in an upcoming randomized trial.     

Patient and Disease Characteristics Associated with Activation for Self-Management in Patients with Diabetes,Chronic Obstructive Pulmonary Disease,Chronic Heart Failure and Chronic Renal Disease: A Cross-Sectional Survey Study

A substantial proportion of chronic disease patients do not respond to self-management interventions, which suggests that one size interventions do not fit all, demanding more tailored interventions. To compose more individualized strategies, we aim to increase our understanding of characteristics associated with patient activation for self-management and to evaluate whether these are disease-transcending. A cross-sectional survey study was conducted in primary and secondary care in patients with type-2 Diabetes Mellitus (DM-II), Chronic Obstructive Pulmonary Disease (COPD), Chronic Heart Failure (CHF) and Chronic Renal Disease (CRD). Using multiple linear regression analysis, we analyzed associations between self-management activation (13-item Patient Activation Measure; PAM-13) and a wide range of socio-demographic, clinical, and psychosocial determinants. Furthermore, we assessed whether the associations between the determinants and the PAM were disease-transcending by testing whether disease was an effect modifier. In addition, we identified determinants associated with low activation for self-management using logistic regression analysis. We included 1154 patients (53% response rate); 422 DM-II patients, 290 COPD patients, 223 HF patients and 219 CRD patients. Mean age was 69.6±10.9. Multiple linear regression analysis revealed 9 explanatory determinants of activation for self-management: age, BMI, educational level, financial distress, physical health status, depression, illness perception, social support and underlying disease, explaining a variance of 16.3%. All associations, except for social support, were disease transcending. This study explored factors associated with varying levels of activation for self-management. These results are a first step in supporting clinicians and researchers to identify subpopulations of chronic disease patients less likely to be engaged in self-management. Increased scientific efforts are needed to explain the greater part of the factors that contribute to the complex nature of patient activation for self-management.     

Focus: Rare Disease: Neuromonitoring in Rare Disorders of Metabolism

Inborn errors of metabolism (IEM) are a unique class of genetic diseases due to mutations in genes involved in key metabolic pathways. The combined incidence of IEM has been estimated to be as high as 1:1000. Urea Cycle disorders (UCD), one class of IEM, can present with cerebral edema and represent a possible target to explore the utility of different neuromonitoring techniques during an hyperammonemic crisis. The last two decades have brought advances in the early identification and comprehensive management of UCD, including further understanding of neuroimaging patterns associated with neurocognitive function. Nonetheless, very important questions remain about the potential acute neurotoxic effects of hyperammonemia to better understand how to treat and prevent secondary brain injury. In this review, we describe existing neuromonitoring techniques that have been used in rare metabolic disorders to assess and allow amelioration of ongoing brain injury. Directions of future research should be focused on identifying new diagnostic approaches in the management of metabolic crises to optimize care and reduce long term morbidity and mortality in patients with IEM.     

Supporting families involved in court cases about life‐sustaining treatment: Working as academics,advocates and activists

This article explores the links between our roles as academics, advocates, and activists, focusing on our research on treatment decisions for patients in vegetative and minimally conscious states. We describe how our work evolved from personal experience through traditional social science research to public engagement activities and then to advocacy and activism. We reflect on the challenges we faced in navigating the relationship between our research, advocacy, and activism, and the implications of these challenges for our research ethics and methodology—giving practical examples of how we worked with research participants, wrote up case studies and developed interventions into legal debates. We also address the implications of the impact agenda—imposed by the British Research Excellence Framework— for our actions as scholar‐activists. Finally, we ask how practicing at the borders of academia, advocacy, and activism can inform research—helping to contextualize, sensitize, and engage theory with practice, leading to a more robust analysis of data and its implications, and helping to ensure a dialogue between research, theory, lived experience, front‐line practice, law, and public policy.     

Why Japanese workers show low work engagement: An item response theory analysis of the Utrecht Work Engagement scale

With the globalization of occupational health psychology, more and more researchers are interested in applying employee well-being like work engagement (i.e., a positive, fulfilling, work-related state of mind that is characterized by vigor, dedication, and absorption) to diverse populations. Accurate measurement contributes to our further understanding and to the generalizability of the concept of work engagement across different cultures. The present study investigated the measurement accuracy of the Japanese and the original Dutch versions of the Utrecht Work Engagement Scale (9-item version, UWES-9) and the comparability of this scale between both countries. Item Response Theory (IRT) was applied to the data from Japan (N = 2,339) and the Netherlands (N = 13,406). Reliability of the scale was evaluated at various levels of the latent trait (i.e., work engagement) based the test information function (TIF) and the standard error of measurement (SEM). The Japanese version had difficulty in differentiating respondents with extremely low work engagement, whereas the original Dutch version had difficulty in differentiating respondents with high work engagement. The measurement accuracy of both versions was not similar. Suppression of positive affect among Japanese people and self-enhancement (the general sensitivity to positive self-relevant information) among Dutch people may have caused decreased measurement accuracy. Hence, we should be cautious when interpreting low engagement scores among Japanese as well as high engagement scores among western employees.     

PERSONAL IDENTITY, ENHANCEMENT AND NEUROSURGERY: A QUALITATIVE STUDY IN APPLIED NEUROETHICS

Recent developments in the field of neurosurgery, specifically those dealing with the modification of mood and affect as part of psychiatric disease, have led some researchers to discuss the ethical implications of surgery to alter personality and personal identity. As knowledge and technology advance, discussions of surgery to alter undesirable traits, or possibly the enhancement of normal traits, will play an increasingly larger role in the ethical literature. So far, identity and enhancement have yet to be explored in a neurosurgical context, despite the fact that 1) neurological disease and treatment both potentially alter identity, and 2) that neurosurgeons will likely be the purveyors of future enhancement implantable technology. Here, we use interviews with neurosurgical patients to shed light on the ethical issues and challenges that surround identity and enhancement in neurosurgery. The results provide insight into how patients approach their identity prior to potentially identity-altering procedures and what future ethical challenges lay ahead for clinicians and researchers in the field of neurotherapeutics.     

Commentary: Moving From Practice to Research,and Back

It is a widely accepted idea that knowledge from research needs to be better integrated into practice. Considerable energy is dedicated to strengthening the flow of research to practice. Less attention, however, has been paid to strengthening the ways researchers can learn from practice to improve their work. In this commentary, we draw on our work over the past decade to offer reflections on the nature and pace of practice, the gaps between practitioners’ needs and available research, and the importance of trust and relationships. Although there are no easy responses to these challenges, we can create a dialogue about them and begin to work collectively toward overcoming them.     

One option,two countries,several strategies: subjacent mechanisms of assisted migration implementation in Canada and France

Climate change obliges societies to develop adaptive strategies in order to maintain sustainable management of resources and landscapes. However, the development and implementation of these strategies require dialogue between researchers and policy‐makers about what they understand for adaptation. This dialogue can be hindered by language differences, the hidden agendas, and conflicting concerns of those involved. In this research study, we explored the mechanisms that underlie the implementation process of assisted migration (AM), an adaptation strategy that aims to limit the impact of climate change. We conducted a comparative analysis of 80 semistructured interviews with actors in the forestry sectors in Canada and France. In Canada, our results show a division between the provinces strategies, causing a debate about AM because researchers are wary of the geoengineering and economic arguments that frame AM in areas where the effects of climate change remain unclear. In contrast, we found that the observation of climate impacts is a strong trigger for the application of AM despite an awareness of its associated risks. In France, we explained the absence of AM implementation by a lack of information flow between research and foresters regarding the concept of AM, a cultural attachment of French foresters to their forest landscapes and that climate change effects are not clear yet. Clarity on what implies a true ecological engineering approach in ecological restoration can help maintaining adaptive actions like AM within the general scope of ecosystem management and minimize simplistic applications of adaptation strategies because of climate change.     

Some practical suggestions for improving engagement between researchers and policy‐makers in natural resource management

Summary Policy‐makers and managers in natural resource management (NRM) often complain that researchers are out of touch. Researchers often complain that policy‐makers and managers make poorly informed decisions. In this article, we report on a meeting between researchers, policy‐makers and managers convened to identify practical solutions to improve engagement between these camps. A necessary starting point is that every researcher and policy‐maker should understand, and tap into, the motivations and reward systems of the other when seeking engagement. For example, researchers can be motivated to engage in policy development if there is a promise of outputs that align with their reward systems such as co‐authored publications. Successful research–policy partnerships are built around personal relationships. As a researcher, you cannot therefore expect your results to inform policy by only publishing in journals. As a policy‐maker, you cannot guarantee engagement from researchers by publicly inviting comment on a document. Actively building and maintaining relationships with key individuals through discussions, meetings, workshops or field days will increase the likelihood that research outcomes will inform policy decisions. We identified secondments, sabbaticals, fellowships and ‘buddies’, an annual national NRM conference and ‘contact mapping’ (a Facebook‐type network) as forums that can catalyse new relationships between researchers and policy‐makers. We challenge every researcher, policy‐maker and manager in NRM to build one new cross‐cultural relationship each year.     

Community Members' Engagement with and Involvement in Genomic Research: Lessons to Learn from the Field

In this paper, we describe the potential role laypersons on ethics committees can play in ensuring community concerns are addressed in the design and implementation of genomic research. We draw inferences from the outcome of an empirical study of the impact of training of laypersons to address community engagement issues in ethics review of research protocol. While this paper does not advocate a particular solution, it describes the importance of community engagement in genomic research, the current limitations there are in engaging communities in the design of these research projects and how communities can be indirectly engaged in the design and implementation of genomic research through the engagement of laypersons on ethics committees. However, to ensure that these laypersons can play this role, their capacity needs to be built to play this role appropriately. There is evidence to show that where resources are invested in building the capacity of laypersons to play their role as community ‘watchdogs’ in research, they play this role aptly. Community engagement is important in genomic research as genomic researchers will increasingly require community perspectives in critical ethics decision making.