Traditional Research Settings Research Articles

The Effects of Subjective Cognitive Decline on APOE Genotype Disclosure in the Butler Hospital Alzheimer’s Prevention Registry

Subjective cognitive decline (SCD) and APOE genotyping are both instrumental in identifying high-risk individuals for Alzheimer's disease (AD) prevention trials. This study examined the relationship between SCD and the impact of APOE disclosure on the psychological and behavioral health of cognitively unimpaired individuals. Design/Setting/Participant: We recruited 189 trial volunteers (mean age 66, 65% female, 96% White), from the Butler Hospital Alzheimer's Prevention Registry. Participants completed screening for cognitive impairment and a psychological readiness assessment before learning their APOE genotype, and were followed for 6 months after. SCD had a modest, temporary impact on mood and event-related distress following APOE disclosure, specifically on those who were ε4 carriers. The presence of SCD (SCD+) did not compound the AD genetic test-specific distress related to learning that one was an ε4 carrier. SCD also did not moderate changes in perceived AD risk, with all non-carriers showing a more rapid decrease in perceived risk over time than carriers. Counterintuitively, those without SCD (SCD-) reported taking more steps in future-directives than the SCD+ group at baseline and after disclosure, potentially suggesting that those with SCD may have subtle executive declines that limit future-oriented actions or fear-avoidance behaviors. Further, the SCD- group was more accurate in recalling their APOE status and the recall accuracy correlated with their broad knowledge about APOE as a risk gene for AD. Our findings support the safety and tolerability of APOE disclosure in research volunteers regardless of their SCD statuses, but further studies are warranted to include diverse individuals and those pursuing testing through direct-to-consumer services outside of traditional research settings.

Toward a better understanding of nonoccupational sound exposures and associated health impacts: Methods of the Apple Hearing Study.

Globally, noise exposure from occupational and nonoccupational sources is common, and, as a result, noise-induced hearing loss affects tens of millions of people. Occupational noise exposures have been studied and regulated for decades, but nonoccupational sound exposures are not well understood. The nationwide Apple Hearing Study, launched using the Apple research app in November 2019 (Apple Inc., Cupertino, CA), is characterizing the levels at which participants listen to headphone audio content, as well as their listening habits. This paper describes the methods of the study, which collects data from several types of hearing tests and uses the Apple Watch noise app to measure environmental sound levels and cardiovascular metrics. Participants, all of whom have consented to participate and share their data, have already contributed nearly 300 × 106 h of sound measurements and 200 000 hearing assessments. The preliminary results indicate that environmental sound levels have been higher, on average, than headphone audio, about 10% of the participants have a diagnosed hearing loss, and nearly 20% of the participants have hearing difficulty. The study's analyses will promote understanding of the overall exposures to sound and associated impacts on hearing and cardiovascular health. This study also demonstrates the feasibility of collecting clinically relevant exposure and health data outside of traditional research settings.

The challenging role of researchers coping with tensions, dilemmas and paradoxes in transdisciplinary settings

AbstractTransdisciplinary learning is a response to address the comprehensive sustainability competencies for implementing the 17 sustainability goals of the Agenda 2030. Transdisciplinary contexts include socially distributed knowledge beyond scientific boundaries. This impacts the whole design process and specific tasks and roles of the researchers. Addressing the questions, “Which typical tensions, dilemmas and paradoxes need to be faced by researches in transdisciplinary settings?”, and “How does the role of the researchers change and goes beyond traditional research settings when operating in transdisciplinary settings surrounded by tensions, dilemmas and paradoxes?”, answers will be provided following existing analytical frameworks of transdisciplinary research design. Based on own experiences with and including observations of transdisciplinary settings at academia, transdisciplinary research and lecture settings will be analysed and compared by transdisciplinary criteria. Results show, in transdisciplinary settings, researchers or lecturers are more engaged with addressing poly‐contextuality, the consciousness of the innovation paradoxes and the side‐effects of ongoing interdependences. They take up multiple roles and have to deal with role ambiguity. Transdisciplinary lecture settings are even more demanding as they also have to meet the mentor role or maintain the students' learning progress.

Migration as a Challenge to the Sustainability of Nordic Gender Equality Policies as Highlighted through the Lived Experiences of Eritrean Mothers Living in Denmark

This study focused on the complex process of adjustment and adaptation experienced by refugee parents from Eritrea who have settled in Aalborg, Denmark. Migration is a challenge to the sustainability of Nordic gender equality policies, in the face of cultural differences between refugees and host countries. This narrative study undertaken in the Eritrean community in Aalborg, Denmark took place against the background of cultural differences between the refugees and their host country, and Nordic gender equality policies. The study was done through the lens of parenting, to provide Eritrean refugee parents in Aalborg with the opportunity to share their lived experiences of settling in Denmark. The overarching aim of this study was to explore with Eritrean parents how they raise their children in a new country, as well as identifying both the challenges they face and the strengths which they bring to that role through their narratives. It aims to improve the understanding of what is significant to these parents during the process of their adaptation to a new environment. The role of refugees is well-established in their country of origin, but exposure to the Nordic Welfare Model which embraces women as being equal to men, is often problematic for Eritrean female refugees. Increasing cross-cultural knowledge in Denmark, through becoming aware of the lived experiences of the refugees as parents is important, particularly for those involved in social services that engage with this community. The study focused on the nature of challenges faced by Eritrean mothers experienced whilst integrating into Danish society. A semi-structured approach was used to obtain and analyze the data that was collected through interpersonal, qualitative methods in a narrative paradigm. The methodology was informed by initial focus groups meetings. Face-to-face engagement with the parents, utilizing an Eritrean interpreter as an integral part of the research team, was used. This study has highlighted the importance of engaging directly with refugee communities within their existing structures with a willingness to understand their culture. This approach may sit outside traditional research settings and service provision norms, but it informs more targeted, culturally appropriate, and acceptable interventions, which will assist the refugee community to effectively integrate into Danish society. The questions raised indicate an urgent need to recognize the cultural differences between refugees and host countries, and for this purpose to obtain more in-depth studies addressing this poorly examined area.

Assessing an evidence-based intervention for spouse caregivers of persons with Alzheimer’s disease: results of a community implementation of the NYUCI in Israel

Objectives Alzheimer’s disease (AD) affects not only the person with the illness, but family caregivers as well. The NYU Caregiver Intervention (NYUCI), a psychosocial intervention which has demonstrated both short and long-term benefits for caregivers, has been used widely in the United States and in Australia and England. The Israeli study was a hybrid between a community implementation study and a randomized controlled trial (RCT) of the NYUCI in a non-English speaking country. Method A sample of 100 spouse caregivers participated in trial comparing the NYUCI provided by ten Israeli clinicians (enhanced care), to support group participation (usual care). The major outcome of interest was caregiver depressive symptoms, measured with the Geriatric Depression Scale. A linear random effects regression model controlling for factors associated with depressive symptoms was used to plot the longitudinal trajectories of depressive symptoms over the two-year study period and compare outcomes for the enhanced care and control groups. Results One hundred spouse caregivers enrolled, of whom 81 provided data at baseline and at one or more post intervention assessments. The Israeli adaptation of the NYUCI was effective in reducing depressive symptoms reported by caregivers compared to their counterparts in the control group, b= −1.29 [95%CI (−2.43, −0.15)], p= .0265. Conclusion While implementing a randomized controlled trial of an intervention developed and tested in traditional research settings using community providers in Israel, posed unique challenges, the study demonstrated benefits to caregivers. As a result, 30 municipalities in Israel are currently implementing an ongoing adaptation of the NYUCI.

The Power of Engaging Citizen Scientists for Scientific Progress.

Citizen science has become a powerful force for scientific inquiry, providing researchers with access to a vast array of data points while connecting nonscientists to the authentic process of science. This citizen-researcher relationship creates an incredible synergy, allowing for the creation, execution, and analysis of research projects that would otherwise prove impossible in traditional research settings, namely due to the scope of needed human or financial resources (or both). However, citizen-science projects are not without their challenges. For instance, as projects are scaled up, there is concern regarding the rigor and usability of data collected by citizens who are not formally trained in research science. While these concerns are legitimate, we have seen examples of highly successful citizen-science projects from multiple scientific disciplines that have enhanced our collective understanding of science, such as how RNA molecules fold or determining the microbial metagenomic snapshot of an entire public transportation system. These and other emerging citizen-science projects show how improved protocols for reliable, large-scale science can realize both an improvement of scientific understanding for the general public and novel views of the world around us.

Effectiveness of an integrated treatment for severe personality disorders. A 36-month pragmatic follow-up

IntroductionOver the past 25 years, several studies have shown the efficacy of a number of psychological interventions for severe personality disorders. However, the generalizability of these positive results from long traditional research settings to more ordinary ones has been questioned, requiring a need for replication in pragmatic studies. MethodsThis pragmatic study compares hospitalizations and Emergency Room visits before and during a 6-month therapeutic programme for severe personality disorders, and at 36 months after starting it. The therapeutic programme, which integrates several specific interventions within a coherent framework, was carried out in an ordinary clinical setting. Fifty-one patients, evaluated according DSM-IV criteria by using the Spanish version of the Structured Clinical Interview for Personality Disorders (SCID-II), were included. ResultsThe clinical characteristics showed a group of severely disturbed patients, of which 78.4% met criteria for borderline personality disorder. The percentage of patients hospitalized and visiting the Emergency Room, as well as the number of days of hospitalisation and Emergency Room visits was significantly reduced during the treatment, and this improvement was maintained throughout. ConclusionsAn integrated treatment for severe personality disorders could be effective in preventing reliance on readmissions, or prolonged hospital stays, when it is implemented by clinicians in ordinary clinical settings.

Knowledge Creation in Inter-organizational Networks

This study analyses the role of network embeddedness with regard to institutional distance, network closure and brokerage. We study how these three concepts affect knowledge creation in the Indian pharmaceutical industry. Our findings contribute to the literature in three ways. First, it enriches the discussion on network embeddedness by providing further support for the disadvantage of closure and the benefits of brokerage with regard to knowledge creation in a research context beyond traditional research settings like the U.S. or Europe. Second, it uniquely provides evidence for the positive contribution of a fit between network closure and institutional distance to a firm’s knowledge generation. Finally, we show how heterogeneity in terms of a high level institutional distance increases innovation output as does a higher level of brokerage. Yet, a high level of brokerage combined with a high level of institutional distance decreases knowledge generation while a high level of institutional distance and ...

Mapping Health Services and Policy Research Settings in Canada: Following the Money, the Publications and the Interest

While health services and policy research (HSPR) has an established footing in traditional research settings (e.g., universities, hospitals, research institutes) in Canada, its presence in other research settings (e.g., government agencies, regional health authorities, charitable organizations) is emergent and less well understood. Drawing on data from the Canadian Institutes of Health Research, the Canadian Health Services Research Foundation, two Canadian HSPR-focused journals (Healthcare Policy and Healthcare Management Forum) and the Canadian Association of Health Services and Policy Research, we mapped HSPR settings based on three different measures: (1) HSPR-related funding, (2) authorship in Canadian HSPR-focused journals and (3) membership in a professional HSPR association. Our findings suggest that while a significant proportion of HSPR is directly linked to non-traditional research settings, the nature and extent of HSPR activity in those settings are unclear.

Money matters: exploiting the data from outcomes research for quality improvement initiatives

In recent years, there has been an increase in studies that have sought to identify predictors of treatment outcome and to examine the efficacy of surgical and non-surgical treatments. In addition to the scientific advancement associated with these studies per se, the hospitals and clinics where the studies are conducted may gain indirect financial benefit from participating in such projects as a result of the prestige derived from corporate social responsibility, a reputational lever used to reward such institutions. It is known that there is a positive association between corporate social performance and corporate financial performance. However, in addition to this, the research findings and the research staff can constitute resources from which the provider can reap a more direct benefit, by means of their contribution to quality control and improvement. Poor quality is costly. Patient satisfaction increases the chances that the patient will be a promoter of the provider to friends and colleagues. As such, involvement of the research staff in the improvement of the quality of care can ultimately result in economic revenue for the provider. The most advanced methodologies for continuous quality improvement (e.g., six-sigma) are data-driven and use statistical tools similar to those utilized in the traditional research setting. Given that these methods rely on the application of the scientific process to quality improvement, researchers have the adequate skills and mind-set to embrace them and thereby contribute effectively to the quality team. The aim of this article is to demonstrate by means of real-life examples how to utilize the findings of outcome studies for quality management in a manner similar to that used in the business community. It also aims to stimulate research groups to better understand that, by adopting a different perspective, their studies can be an additional resource for the healthcare provider. The change in perspective should stimulate researchers to go beyond the traditional studies examining predictors of treatment outcome and to see things instead in terms of the "bigger picture", i.e., the improvement of the process outcome, the quality of the service.

Developing an Internet-based survey to collect program cost data

This manuscript describes the development and testing of an Internet-based cost survey that was designed by the authors for the National Assembly on School-Based Health Care (NASBHC) to capture the costs of school-based health programs. The intent of the survey was twofold. First, the survey was designed to collect comprehensive data on costs in a uniform and consistent manner that would be appropriate for economic evaluations and to inform policy. Second, the survey was constructed such that program administrators potentially could use it as a tool for internal purposes related to operations and planning. We begin by describing the economic conceptual framework on which the survey is based and the need for a cost data collection instrument that can be used both within and outside of a traditional research setting. We then outline the survey components and how they were developed, pilot-tested, and refined. We conclude with a discussion of how this survey is currently being used and how a survey of this type can be applied in other settings to collect program cost data for economic evaluations.

Discectomy strategies for lumbar disc herniation: study design and implications for clinical research

Although previous studies have found automated percutaneous discectomy and epidural percutaneous discectomy to be less efficacious than conventional discectomy, these percutaneous procedures may be effective and cost-effective as a first surgical treatment for herniated lumbar disc. Percutaneous procedures for herniated lumbar disc continue to be performed throughout the world without definitive evidence of efficacy or effectiveness. The objective of this article is to report the design considerations and final design of a study with the following objectives: (1) to estimate the efficacy of automated percutaneous and conventional discectomy in treating single level herniated lumbar discs in comparable patient populations, and (2) to test the hypothesis that the use of percutaneous discectomy as the first surgical procedure in such patients would result in less cost and fewer complications than utilizing conventional discectomy as the first procedure. A multicenter randomized clinical trial was designed that followed published eligibility criteria closely, allowed flexibility in timing of surgery (while collecting natural history information on patients identified before electing surgery), incorporated adjustments for newly developed technology and accommodated the unusual demands of assessing a procedure acknowledged to have inferior medical outcomes when compared to conventional therapy but which offered potential advantages in cost and safety. The study was successfully designed and funded. In its implementation we experienced several obstacles that may affect the success of other clinical trials. Despite using established eligibility criteria, our patient enrollment was lower than expected. Academic health centers and traditional research settings are seeing fewer patients who would be eligible for discectomy; private clinical centers are treating eligible patients but lack the incentives to participate in clinical research. Automated percutaneous discectomy and epidural percutaneous discectomy are widely performed procedures and, despite the aforementioned obstacles, their efficacy and cost-effectiveness need to be scientifically evaluated if we are committed to delivering appropriate patient care.

Community Collaboration to Develop Research Programs in Partner Violence

Effective research and intervention into family violence require interdisciplinary collaboration between professionals in traditional research settings and grass-roots community leaders and advocates. Such interdisciplinary collaboration is frequently difficult. We identify a number of potential barriers to effective collaboration between academic researchers, community agencies and grass roots activists. These include (a) different professional identities, values, world views and motivations for working in the field, (b) social status related to formal degree status vs. lived experience, (c) economic resources, (d) gender, (e) race, (f) ownership of the field and data, and (g) being an unknown quantity. Strategies for overcoming these barriers are described and discussed. Examples of both successful and unsuccessful collaborative efforts illustrate key points.

The Science-Trained Professional

It is generally agreed that there will be significant shifts in the production of knowledge in the coming century. But these shifts are not yet reflected in the (higher, professional) education of knowledge workers. While science-trained ‘flexible experts’ constitute an emerging and significant segment of the intellectual capital of a nation, higher educators are still operating under the old paradigm. There are, however, many different ways of serving society by way of mathematics and science, and many different settings in which future knowledge will be produced. In addition to focused discovery in a traditional research setting, science and technology-based problem solving, technology transfer, management of knowledge production, patent and regulatory affairs, and diffusion of new knowledge are being recognized as more than ancillary tasks in the business of producing knowledge. In this paper, the authors set out the educational implications for the new knowledge society; how supplying differently trained professionals can stimulate demand for their services; barriers to be overcome; a description of some educational innovations in the USA and Europe; and the challenges of finding new means (and criteria) for self-regulation (quality control).