Job description and perception of clinical research personnel working in a network of French intensive care units.

BACKGROUND: There is a lack of information about the organisation and management of clinical research personnel in Europe and of their professional activity in intensive care. We therefore conducted a cross-sectional survey among personnel currently working in a French intensive care research network that involves 41 centres nationwide. The aim of the survey was to describe the personnel's personal and institutional organisation and management, their job perception in terms of satisfaction and stress, and suggestions for improvement. METHODS: Over 3 months in 2023, the research personnel received an electronic questionnaire on their personal and professional profile, past and present training, workplace and functions currently performed, personal knowledge about job skills required, job satisfaction and stress by as measured on a rating scale, and suggested ways of improvement. RESULTS: Ninety seven people replied to the questionnaire (a response rate of 71.3%), of whom 78 (57.3%) were sufficiently involved in intensive care to provide complete answers. This core sample had profiles in line with French recruitment policies and comprised mainly Bachelor/Master graduates, with nurses accounting for only 21.8%. The female to male ratio was 77:23%. Many responders declared to have a shared activity of technician (for investigation) and assistant (for quality control). More than 70% of the responders considered that most of the tasks required of each worker were major. Figures were much lower for project managers, who were few to take part in the survey. On a scale of 10, the median of job satisfaction was 7 for personal work organisation, 6 for training and for institutional organisation, and only 5 for personal career management. The median of job stress was 5 and was inversely correlated with satisfaction with career management. Respect of autonomy, work-sharing activity between investigation and quality control, a better career progression, financial reward for demanding tasks, and participation in unit staff meetings were the main suggestions to improve employee satisfaction. CONCLUSION: This nationwide survey provides a new insight into the activity of French clinical research personnel and points to ways to improve the quality and efficiency of this workforce.

Exploring the merits of research performance measures that comply with the San Francisco Declaration on Research Assessment and strategies to overcome barriers of adoption: qualitative interviews with administrators and researchers.

BACKGROUND: In prior research, we identified and prioritized ten measures to assess research performance that comply with the San Francisco Declaration on Research Assessment, a principle adopted worldwide that discourages metrics-based assessment. Given the shift away from assessment based on Journal Impact Factor, we explored potential barriers to implementing and adopting the prioritized measures. METHODS: We identified administrators and researchers across six research institutes, conducted telephone interviews with consenting participants, and used qualitative description and inductive content analysis to derive themes. RESULTS: We interviewed 18 participants: 6 administrators (research institute business managers and directors) and 12 researchers (7 on appointment committees) who varied by career stage (2 early, 5 mid, 5 late). Participants appreciated that the measures were similar to those currently in use, comprehensive, relevant across disciplines, and generated using a rigorous process. They also said the reporting template was easy to understand and use. In contrast, a few administrators thought the measures were not relevant across disciplines. A few participants said it would be time-consuming and difficult to prepare narratives when reporting the measures, and several thought that it would be difficult to objectively evaluate researchers from a different discipline without considerable effort to read their work. Strategies viewed as necessary to overcome barriers and support implementation of the measures included high-level endorsement of the measures, an official launch accompanied by a multi-pronged communication strategy, training for both researchers and evaluators, administrative support or automated reporting for researchers, guidance for evaluators, and sharing of approaches across research institutes. CONCLUSIONS: While participants identified many strengths of the measures, they also identified a few limitations and offered corresponding strategies to address the barriers that we will apply at our organization. Ongoing work is needed to develop a framework to help evaluators translate the measures into an overall assessment. Given little prior research that identified research assessment measures and strategies to support adoption of those measures, this research may be of interest to other organizations that assess the quality and impact of research.

Primary Care Research Is Hard to Do During COVID-19: Challenges and Solutions.

Conducting research in primary care during the COVID-19 pandemic is hard, due to baseline stresses on primary care, which have been compounded by the pandemic. We acknowledge and validate primary care researchers' frustrations. Using our experience on over 15 individual projects during the pandemic we identify 3 key challenges to conducting primary care research: (1) practice delivery trickle-down effects, (2) limited/changing resources and procedures for research, and (3) a generally tense milieu in US society during the pandemic. We present strategies, informed by a set of questions, to help researchers decide how to address these challenges observed during our studies. In order to overcome and grow from these challenging times we encourage normalization and self-compassion, and encourage researchers and funders to embrace pragmatic and adaptive research designs as the circumstances with COVID-19 evolve over time.

"We're already doing this work": ethical research with community-based organizations.

BACKGROUND: Public health research frequently relies on collaborations with community-based organizations, and these partnerships can be essential to the success of a project. However, while public health ethics and oversight policies have historically focused on ensuring that individual subjects are protected from unethical or unfair practices, there are few guidelines to protect the organizations which facilitate relationships with - and are frequently composed of - these same vulnerable populations. As universities, governments, and donors place a renewed emphasis on the need for community engaged research to address systematic drivers of health inequity, it is vital that the ways in which research is conducted does not uphold the same intersecting systems of gender, race, and class oppression which led to the very same health inequities of interest. METHODS: To understand how traditional notions of public health research ethics might be expanded to encompass partnerships with organizations as well as individuals, we conducted qualitative interviews with 39 staff members (executive directors and frontline) at community-based organizations that primarily serve people who use drugs, Black men who have sex with men, and sex workers across the United States from January 2016 - August 2017. We also conducted 11 in-depth interviews with professional academic researchers with experience partnering with CBOs that serve similar populations. Transcripts were analyzed thematically using emergent codes and a priori codes derived from the Belmont Report. RESULTS: The concepts of respect, beneficence, and justice are a starting point for collaboration with CBOs, but participants deepened them beyond traditional regulatory concepts to consider the ethics of relationships, care, and solidarity. These concepts could and should apply to the treatment of organizations that participate in research just as they apply to individual human subjects, although their implementation will differ when applied to CBOs vs individual human subjects. CONCLUSIONS: Academic-CBO partnerships are likely to be more successful for both academics and CBOs if academic researchers work to center individual-level relationship building that is mutually respectful and grounded in cultural humility. More support from academic institutions and ethical oversight entities can enable more ethically grounded relationships between academic researchers, academic institutions, and community based organizations.

Patient-Centered Framework for Rehabilitation Research in Outpatient Settings.

Conducting high-quality clinical research is dependent on merging scientific rigor with the clinical environment. This is often a complex endeavor that may include numerous barriers and competing interests. Overcoming these challenges and successfully integrating clinical research programs into clinical practice settings serving rehabilitation outpatients is beneficial from both a logistical perspective (eg, supports efficient and successful research procedures) and the establishment of a truly patient-centered research approach. Leveraging our experience with navigating this research-clinical care relationship, this article (1) proposes the Patient-Centered Framework for Rehabilitation Research, a model for integrating patient-centered research in an outpatient clinical setting that incorporates a collaborative, team-based model encompassing patient-centered values, as well as strategies for recruitment and retention, with a focus on populations living with disabilities or chronic diseases; (2) describes application of this framework in a comprehensive specialty multiple sclerosis center with both general strategies and specific examples to guide adaptation and implementation in other settings; and (3) discusses the effect of the framework as a model in 1 center, as well as the need for additional investigation and adaptation for other populations. The 5 interconnected principles incorporated in the Framework and which prioritize patient-centeredness include identifying shared values, partnering with the clinical setting, engaging with the population, building relationships with individuals, and designing accessible procedures. The Patient-Centered Framework for Rehabilitation Research is a model presented as an adaptable roadmap to guide researchers in hopes of not only improving individual patients' experiences but also the quality and relevance of rehabilitation research as a whole. Future investigation is needed to test the Framework in other settings.

"There hasn't been a career structure to step into": a qualitative study on perceptions of allied health clinician researcher careers.

BACKGROUND: There are many demonstrated benefits for health service organizations engaging in research. As a result, growing numbers of clinicians are being encouraged to pursue research as part of their clinical roles, including in allied health (AH). However, while the benefits of having clinician researchers embedded in AH services have been well established, the career needs of those engaged in these dual roles are poorly understood. The aim of this study was to examine perspectives of the career pathway for AH clinicians engaged in "clinician researcher" roles within Australian health services. METHODS: A qualitative descriptive study was conducted, utilizing semi-structured interviews. Purposive sampling was used to ensure selection of varied locations, professions and role types. Results were analysed using thematic analysis. Trustworthiness was established using regular peer debriefing during theme development, and respondent validation of final themes. RESULTS: Fifty-seven AH clinician researchers, including those who did and did not have research as a formal component of their current role, participated in semi-structured interviews. Key themes were as follows: (1) clinician researchers prefer roles which are embedded in health services; (2) current opportunities for clinician researcher roles in health are insufficient; (3) there are deficiencies in the pathway for clinician researcher careers; (4) clinician researchers are not always valued or incentivized by health services; (5) the current career challenges impair the viability of clinician researcher careers; and (6) the clinician researcher career path has been improving, and there is hope it will continue to improve. CONCLUSION: This study outlines a number of weaknesses in the current career structure and opportunities for AH clinician researchers in Australian health services. In particular, while there are strong intrinsic drivers to pursue this dual career, extrinsic drivers are poorly developed, including a lack of job opportunities, an unstable career pathway and a lack of valuing or incentivizing this career choice within health services. This often means that clinician researchers feel compelled to choose between a research or clinical career, leading to loss of this valuable combined skill set. The findings of this research may assist health services in developing and supporting improved clinician researcher career pathways.

Embedded researchers in Australia: Survey of profile and experience across medical, nursing and midwifery and allied health disciplines.

AIMS AND OBJECTIVES: This study explores embedded researcher's age, qualifications, research environment and experience in healthcare and academic organisations in Australia and makes comparisons across three core professional disciplines of nursing and midwifery, medicine and allied health. BACKGROUND: The embedded researcher model, where a researcher is embedded as a core member of the clinical team, offers promise to support the implementation of research evidence into practice. Currently, there is a lack of clarity about how the model has been adopted across the three largest professional disciplines in Australian health care. DESIGN: A cross-sectional survey was designed and reported, using the STROBE Statement. METHODS: A purposive sample of embedded researchers was invited to participate in an exploratory online survey. Embedded researchers worked, or had worked, for a minimum of 30% of their time, in a healthcare organisation doing research or building research capacity. Participant responses were extracted from the survey and imported into SPSS for analysis. RESULTS: Perspectives of 100 Australian embedded researchers were compared across nursing and midwifery (36%, n = 37), allied health (35%, n = 36) and medicine (26%, n = 27). Professional differences are reported in respondents' qualifications and experience, employment conditions and their research cultures and environments. Comparatively, most nursing and midwifery embedded researchers were older, more clinically experienced than allied health respondents, who were more research qualified. Medical-embedded researchers are typically older, more clinically experienced and focussed on producing personally relevant clinical research. Nursing and midwifery embedded researchers reported doing clinical research within their teams, as well as research capacity building, management and clinical practice roles. CONCLUSIONS: Embedded researchers describe different career trajectories across the three largest professional disciplines in Australian health care. RELEVANCE TO CLINICAL PRACTICE: Embedded researchers from different professional disciplines enact their work differently. It appears that when they engage in research capacity building via a range of management and networking roles, embedded researchers contribute to their organisation's research culture and receive greater recognition for their achievements.

What is a clinical academic? Qualitative interviews with healthcare managers, research-active nurses and other research-active healthcare professionals outside medicine.

AIMS AND OBJECTIVES: To explore the concept of "clinical academic" from the perspectives of healthcare managers and research-active healthcare professionals outside medicine. BACKGROUND: Clinical academics are understood to be healthcare professionals who combine clinical and research responsibilities within their role. However, there is no agreed definition for this term either within or across nursing, midwifery and the other healthcare professions outside medicine. DESIGN: Qualitative service evaluation, reported using the COREQ checklist. METHODS: Semi-structured qualitative interviews were conducted with a purposive sample of eight healthcare managers and 12 research-active clinicians within a UK hospital group. Interviews were audio recorded, transcribed verbatim and analysed using the Framework method. RESULTS: Clinical academics were described in four themes. Two themes explored the components of the role and the contribution of these individuals to their profession: combining clinical practice, research and education; and pushing boundaries. The third theme identified the clinical academic label as: a title that doesn't fit. The final theme examined a characteristic mindset of research-active clinicians. There were no clear differences in the perceptions of managers and research-active clinicians. CONCLUSIONS: Clinical academics were perceived as valuable members of their team and were able to push the boundaries to move their profession forward. Some research-active clinicians did not identify with the term "clinical academic" and for some managers and research-active clinicians, the term was viewed as jargonistic. A clear and accepted definition would aid development of clinical academic career pathways and identities. It would also assist in evaluating the impact of these roles. RELEVANCE TO PRACTICE: As clinical academic roles and opportunities are being developed across the professions outside medicine, it is important to have a shared common understanding of "clinical academic" to support the creation of career pathways and curricula, and to enable the evaluation of these roles.

Recruitment principles and strategies for supportive care research in pediatric oncology.

BACKGROUND: Variations in clinical practice contribute to negative outcomes for children with cancer. Research in this area is imperative to standardise practice, yet such research is challenging to undertake, and a significant proportion of studies fail. A common reason for failure is poor recruitment, yet little information is available to support researchers and clinicians planning such research. METHODS: Our primary aim was to describe the recruitment strategies and outcomes in a tertiary children's hospital across multiple observational supportive care studies. Secondary aims were to establish principles to improve both recruitment strategies and the reporting of recruitment. We undertook a retrospective descriptive analysis of the recruitment logs and data from three studies in pediatric oncology. The mean time to recruit one participant was calculated. Common reasons for not approaching eligible participants and reasons potential participants declined are described. RESULTS: Of the 235 potential candidates across all studies, 186 (79%) were approached and of these 125 (67%) provided consent, with 117 (63%) completing baseline measures. We estimated recruitment per participant required an average 98 min of experienced research nurse time. Four factors are described that influence recruitment and six principles are outlined to maximise recruitment and the generalisability of research findings. CONCLUSIONS: We highlight the recruitment experiences across three different projects in children's cancer supportive care research and provide a roadmap for other researchers planning to undertake clinical research in pediatrics.

Performance status and trial site-level factors are associated with missing data in palliative care trials: An individual participant-level data analysis of 10 phase 3 trials.

BACKGROUND: Missing data compromise the internal and external validity of trial findings, however there is limited evidence on how best to reduce missing data in palliative care trials. AIM: To assess the association between participant and site level factors and missing data in palliative care trials. DESIGN AND SETTING: Individual participant-level data analysis of 10 phase 3 palliative care trials using multi-level cross-classified models. RESULTS: Participants with missing data at the previous time-point and poorer performance status were more likely to have missing data for the primary outcome and quality of life outcomes, at the primary follow-up point and end of follow-up. At the end of follow-up, the number of site randomisations and number of study site personnel were significantly associated with missing data. Trial duration and the number of research personnel explained most of the variance at the trial and site-level respectively, except for the primary outcome where the amount of data requested was most important at the trial-level. Variance at the trial level was more substantial than at the site level across models and considerable variance remained unexplained for all models except quality of life at the end of follow-up. CONCLUSION: Participants with a poorer performance status are at higher risk of missing data in palliative care trials and require additional support to provide complete data. Performance status is a potential auxiliary variable for missing data imputation models. Reducing trial variability should be prioritised and further factors need to be identified and explored to explain the residual variance.

Actual and perceived knowledge of research ethics guidelines in a sample of public health clinicians.

BACKGROUND: The conduct of research by clinicians is vital to maintain evidence-based practice and currency of clinician knowledge. However, the ability to conduct valid research is contingent on several factors including the knowledge of research ethics guidelines applicable within the researcher's location. AIMS: To compare the actual and perceived knowledge of research ethics guidelines in a sample of healthcare clinicians in a public health service. METHODS: A prospective cross-sectional design utilising an anonymous online survey. RESULTS: Of the 432 valid responses, 8% were totally well calibrated on perceived and actual knowledge. A further 9% were totally miscalibrated on all items. The remaining 83% of respondents were variously miscalibrated on 1-4 items. The majority of miscalibrated responses represented overconfidence. CONCLUSIONS: Clinicians are not as knowledgeable as they think about research ethics. This has implications for help-seeking behaviours within this population and highlights challenges for stakeholders in the provision of research support and education.

What makes a 'successful' collaborative research project between public health practitioners and academics? A mixed-methods review of funding applications submitted to a local intervention evaluation scheme.

BACKGROUND: The national Public Health Practice Evaluation Scheme (PHPES) is a response-mode funded evaluation programme operated by the National Institute for Health Research School for Public Health Research (NIHR SPHR). The scheme enables public health professionals to work in partnership with SPHR researchers to conduct rigorous evaluations of their interventions. Our evaluation reviewed the learning from the first five years of PHPES (2013-2017) and how this was used to implement a revised scheme within the School. METHODS: We conducted a rapid review of applications and reports from 81 PHPES projects and sampled eight projects (including unfunded) to interview one researcher and one practitioner involved in each sampled project (n = 16) in order to identify factors that influence success of applications and effective delivery and dissemination of evaluations. Findings from the review and interviews were tested in an online survey with practitioners (applicants), researchers (principal investigators [PIs]) and PHPES panel members (n = 19) to explore the relative importance of these factors. Findings from the survey were synthesised and discussed for implications at a national workshop with wider stakeholders, including public members (n = 20). RESULTS: Strengths: PHPES provides much needed resources for evaluation which often are not available locally, and produces useful evidence to understand where a programme is not delivering, which can be used to formatively develop interventions. Weaknesses: Objectives of PHPES were too narrowly focused on (cost-)effectiveness of interventions, while practitioners also valued implementation studies and process evaluations. Opportunities: PHPES provided opportunities for novel/promising but less developed ideas. More funded time to develop a protocol and ensure feasibility of the intervention prior to application could increase intervention delivery success rates. Threats: There can be tensions between researchers and practitioners, for example, on the need to show the 'success' of the intervention, on the use of existing research evidence, and the importance of generalisability of findings and of generating peer-reviewed publications. CONCLUSIONS: The success of collaborative research projects between public health practitioners (PHP) and researchers can be improved by funders being mindful of tensions related to (1) the scope of collaborations, (2) local versus national impact, and (3) increasing inequalities in access to funding. Our study and comparisons with related funding schemes demonstrate how these tensions can be successfully resolved.

Researcher practitioner engagement in health research: The development of a new concept.

The engagement of frontline practitioners in the production of research-derived knowledge is often advocated. Doing so can address perceived gaps between what is known from research and what happens in clinical practice. Engagement practices span a continuum, from co-production approaches underpinned by principles of equality and power sharing to those which can minimalize practitioners' contributions to the knowledge production process. We observed a conceptual gap in published healthcare literature that labels or defines practitioners' meaningful contribution to the research process. We, therefore, aimed to develop the concept of "Researcher Practitioner Engagement" in the context of academically initiated healthcare research in the professions of nursing, midwifery, occupational therapy, physiotherapy, and speech and language therapy. Guided by Schwartz-Barcott et al.'s hybrid model of concept development, published examples were analyzed to establish the attributes, antecedents, and consequences of this type of engagement. Academic researchers (n = 17) and frontline practitioners (n = 8) with relevant experience took part in online focus groups to confirm, eliminate, or elaborate on these proposed concept components. Combined analysis of theoretical and focus group data showed that the essence of this form of engagement is that practitioners' clinical knowledge is valued from a study's formative stages. The practitioner's clinical perspectives inform problem-solving and decision-making in study activities and enhance the professional and practice relevance of a study. The conceptual model produced from the study findings forms a basis to guide engagement practices, future concept testing, and empirical evaluation of engagement practices.

Exploring primary care physician experiences conducting practice-based research on adult vaccination: a qualitative evaluation study in Greece.

BACKGROUND: Research in primary care is necessary to empower its role in health systems and improve population health. OBJECTIVE: The aim of this evaluation study was to assess the experiences of primary care physicians who participated as researchers in a multi-centre, mixed-methodology study on adult vaccination supported by a newly established practice-based research network. METHODS: Twenty-three physicians participated as researchers, operating in their own practices in 10 different prefectures of Greece. After the completion of the study, they were asked to reflect on their experiences in the research by providing written responses to the questions on the evaluation tool of the study. The open-ended questions were analyzed using thematic content analysis. RESULTS: Mean age of the researchers was 42.9 years old (±3.9, min 35, max 49) and 11 (47.8%) were male. Six themes emerged as beneficial for the participating researchers: (i) raised awareness of patients' needs, (ii) enhancement of clinical practice and services offered, (iii) positive impact on the doctor-patient relationship, (iv) personal satisfaction, (v) enrichment of their curriculum vitae and (vi) improvement of research skills. All researchers were interested in participating in future studies. CONCLUSION: The experience of conducting clinical research on adult vaccination in their own practices within a network was reported to be very rewarding. The benefits gained from their participation could be a valuable tool in promoting research and enhancing the quality of primary health care.

Features of scholarly practice in health care professionals: A scoping review protocol.

INTRODUCTION: Health care professionals are expected to embrace and enact the scholarly practitioner role. Scholarly practitioners demonstrate a lifelong commitment to excellence in practice through continuous learning, engagement in evidence-informed decision-making, contributions to scholarship, and knowledge translation. However, the specific features and requirements associated with this role are not uniform. The absence of well-defined and delineated conceptualizations of scholarly practice and the scarcity of empirical research on how scholarly practice is operationalized contribute to a lack of a shared understanding of this complex role. AIM: The purpose of this scoping review is to map the breadth and depth of the literature on what is known about scholarly practice in licensed health care professionals. METHODS: Arksey and O'Malley's 6-stage scoping review framework will be used to examine the breadth and depth of the literature on the definitions and conceptualizations of the scholar role in health care professionals. We will conduct a comprehensive search from inception to present in MEDLINE (Ovid), EMBASE (Ovid), and CINAHL using scholarly practitioner terms and related synonyms, including a grey literature search. Following a calibration exercise, two independent reviewers will screen retrieved papers for inclusion and extract relevant data. Included papers will: (i) explore, describe, or define scholarly practice, scholar or scholarly practitioner, and/or related concepts in the licensed health care professionals; (ii) be conceptual and/or theoretical in nature; (iii) use quantitative, qualitative, or mixed methodologies; and (iv) be published in English or French. Numeric and thematic analysis will characterize the data and address the research objectives.

Coming from two different worlds-A qualitative, exploratory study of the collaboration between patient representatives and researchers.

BACKGROUND: Interest in user involvement in research has increased and user involvement is increasingly seen as a prerequisite. Still, challenges in the collaboration process have been documented from both researchers' and users' perspective. OBJECTIVE: By bringing together researchers and patient representatives, this study explores and describes both parties' experiences with user involvement in research as they appear through interactions in a focus group. DESIGN: We apply a qualitative design using positioning theory as a theoretical framework. SETTING AND PARTICIPANTS: Researchers and patient representatives were mixed within 2 focus groups. Positioning theory was used to guide the analysis. FINDINGS: The discussion evolved around knowledge, equity and partnership, all related to power through constant negotiations of positions. Researchers and users ascribed various positions while discussing these topics. Various positions are seen as the result of different rights and duties in the research process. Power differences in the form of different rights and duties stand out as barriers. Being positioned as a partner was an important aspect for users in our study. Researchers assumed passive positions within the focus group, whereas users assumed active positions by expressing their wishes and needs. DISCUSSION AND CONCLUSION: Our study indicates that positions relating to status and knowledge in the involvement process are important. The findings suggest that the positions that users and researchers assume and ascribe throughout the process are constantly changing; however, the researchers tend to have more power. More studies are needed to understand how equity is perceived in user involvement in health research.

Researchers' perspectives on public involvement in health research in Singapore: The argument for a community-based approach.

BACKGROUND: Singapore is becoming a world-class research hub, promoting the advancement of patient care through translational clinical research. Despite growing evidence internationally of the positive impact of public involvement (PPI), in Singapore PPI remains unusual beyond patient participation as subjects in studies. OBJECTIVE: To explore health researchers' understandings of the principles, role and scope of PPI, and to identify barriers and opportunities for implementation in Singapore. DESIGN: Semi-structured qualitative interviews between April and July 2018. Data were analysed using thematic framework analysis. RESULTS: Whilst most participants (n = 20) expressed a lack of experience of PPI, the interview process provided an opportunity for reflection through which it emerged as a beneficial strategy. Interviewees highlighted both utilitarian and ethical reasons for implementing PPI, particularly around increasing the relevance and efficiency of research. In addition to those challenges to PPI documented in the existing literature, participants highlighted others specific to the Singaporean context that make PPI at an individual level unlikely to be successful, including the socio-political environment and prevailing social and professional hierarchies. They also identified asset-based strategies to overcome these, in particular, a more community-oriented approach. CONCLUSION: The cultural reluctance of individuals to question perceived authority figures such as researchers may be overcome by adopting an approach to PPI that is closer to family and local community values, and which facilitates patients and the public collectively engaging in research. Further work is needed to explore the views of patients and the public in Singapore, and the implications for other Asian communities.

Training opportunities for noncommunicable diseases research in Latin America: A scoping review.

OBJECTIVE: To identify gaps in postgraduate training and options for building capacity in noncommunicable disease (NCDs) research in Latin America. METHODS: This was a scoping review of postgraduate opportunities in NCDs at top universities in Latin America and of training grants awarded by international funding bodies. Three global university rankings were considered-the QS Ranking, the Shanghai Ranking, and the Times Ranking. Latin American universities appearing in at least two of these were selected. University websites were searched for current graduate programs in biostatistics, epidemiology, global health, health economics, and public health. Information was extracted, summarized, and evaluated to identify any programs focused on NCDs. In addition, seven international funding bodies' websites were searched for training grants. RESULTS: In all, 33 universities offering 72 postgraduate programs met the inclusion criteria. One of these programs was exclusively devoted to NCD, and 12 offered NCDs as a dissertation research topic. Only two training grants were awarded to a Latin American institution for NCD capacity building. There are few NCD research training programs in Latin America and only one program exclusively focused on NCDs. CONCLUSION: There seem to be few NCD-specific research training programs in Latin America. Leveraging existing programs and expanding those with a focus on NCDs could help enhance NCD research capacity in the region. These initiatives should be supported by international funding agencies through more funding opportunities.

Barriers to clinical research in Africa: a quantitative and qualitative survey of clinical researchers in 27 African countries.

BACKGROUND: There is a need for high quality research to improve perioperative patient care in Africa. The aim of this study was to understand the particular barriers to clinical research in this environment. METHODS: We conducted an electronic survey of African Surgical Outcomes Study (ASOS) investigators, including 29 quantitative Likert scale questions and eight qualitative questions with subsequent thematic analysis. Protocol compliant and non-compliant countries were compared according to WHO statistics for research and development, health workforce data, and world internet statistics. RESULTS: Responses were received from 134/418 of invited researchers in 24/25 (96%) of participating countries, and three non-participating countries. Barriers included lack of a dedicated research team (47.7%), reliable internet access (32.6%), staff skilled in research (31.8%), and team commitment (23.8%). Protocol compliant countries had significantly more physicians per 1000 population (4 vs 0.9, P<0.01), internet penetration (38% vs 28%, P=0.01) and published clinical trials (1461 vs 208, P<0.01) compared with non-compliant countries. Facilitators of research included establishing a research culture (86.9%), simple data collection tools (80%), and ASOS team interaction (77.9%). Most participants are interested in future research (93.8%). Qualitative data reiterated human resource, financial resource, and regulatory barriers. However, the desire to contribute to an African collaboration producing relevant data to improve patient outcomes was expressed strongly by ASOS investigators. CONCLUSIONS: Barriers to successful participation in ASOS related to resource limitations and not motivation of the clinician investigators. Practical solutions to individual barriers may increase the success of multi-centre perioperative research in Africa.

Inclusion of non-English-speaking patients in research: A single institution experience.

BACKGROUND: Considering the recent increase in medical care provided to patients from foreign countries and the diversity of languages spoken by families living within the United States, it is important to determine whether non-English-speaking patients have access to participate in clinical research from which they may benefit. AIMS: We aimed to determine the number of non-English-speaking patients presenting to Boston Children's Hospital for medical care between 2011 and 2016, the number of clinical research protocols active within the Department of Anesthesiology, Critical Care and Pain Medicine approved to enroll non-English-speaking patients, as well as the number of both non-English- and English-speaking patients approached and enrolled in these studies. Furthermore, we attempted to determine barriers that may have prevented non-English-speaking patients from inclusion in clinical research. METHODS: We conducted a retrospective review of various data sources during a 5-year period. Data included the number of non-English-speaking patients presenting to Boston Children's Hospital for care as well as the number of English- and non-English-speaking patients approached for studies at the Department of Anesthesiology each year. Additionally, we reviewed data from the IRB which included the justification that research teams provided when opting to exclude non-English-speaking participants. In addition, we attempted to determine the barriers that may have prevented these patients from inclusion in research protocols. RESULTS: We found that the number of non-English-speaking patients presenting to Boston Children's Hospital increased over time. However, the number of studies approved to enroll non-English-speaking patients within the Department of Anesthesiology and the rate of enrollment of these patients did not increase at the same rate. CONCLUSION: In order to increase the number of non-English-speaking patients approached to participate in research, we must improve cultural awareness and provide investigators with resources for interpreter and translation services.