Search

Abstract Background Patient engagement in research refers to collaboration between researchers and patients (i.e., individuals with lived experience including informal caregivers) in developing or conducting research. Offering non-financial (e.g., co-authorship, gift) or financial (e.g., honoraria, salary) compensation to patient partners can demonstrate appreciation for patient partner time and effort. However, little is known about how patient partners are currently compensated for their engagement in research. We sought to assess the prevalence of reporting patient partner compensation, specific compensation practices (non-financial and financial) reported, and identify benefits, challenges, barriers and enablers to offering financial compensation. Methods We conducted a systematic review of studies citing the Guidance for Reporting the Involvement of Patients and the Public (GRIPP I and II) reporting checklists (October 2021) within Web of Science and Scopus. Studies that engaged patients as research partners were eligible. Two independent reviewers screened full texts and extracted data from included studies using a standardized data abstraction form. Data pertaining to compensation methods (financial and non-financial) and reported barriers and enablers to financially compensating patient partners were extracted. No formal quality assessment was conducted since the aim of the review is to describe the scope of patient partner compensation. Quantitative data were presented descriptively, and qualitative data were thematically analysed. Results The search identified 843 studies of which 316 studies were eligible. Of the 316 studies, 91% (n = 288) reported offering a type of compensation to patient partners. The most common method of non-financial compensation reported was informal acknowledgement on research outputs (65%, n = 206) and co-authorship (49%, n = 156). Seventy-nine studies (25%) reported offering financial compensation (i.e., honoraria, salary), 32 (10%) reported offering no financial compensation, and 205 (65%) studies did not report on financial compensation. Two key barriers were lack of funding to support compensation and absence of institutional policy or guidance. Two frequently reported enablers were considering financial compensation when developing the project budget and adequate project funding. Conclusions In a cohort of published studies reporting patient engagement in research, most offered non-financial methods of compensation to patient partners. Researchers may need guidance and support to overcome barriers to offering financial compensation.

Abstract Background An integral aspect of patient engagement in research, also known as patient and public involvement, is appropriately recognising patient partners for their contributions through compensation (e.g., coauthorship, honoraria). Despite known benefits to compensating patient partners, our previous work suggested compensation is rarely reported and researchers perceive a lack of guidance on this issue. To address this gap, we identified and summarised available guidance and policy documents for patient partner compensation. Methods We conducted this scoping review in accordance with methods suggested by the JBI. We searched the grey literature (Google, Google Scholar) in March 2022 and Overton (an international database of policy documents) in April 2022. We included articles, guidance or policy documents regarding the compensation of patient partners for their research contributions. Two reviewers independently extracted and synthesised document characteristics and recommendations. Results We identified 65 guidance or policy documents. Most documents were published in Canada (57%, n = 37) or the United Kingdom (26%, n = 17). The most common recommended methods of nonfinancial compensation were offering training opportunities to patient partners (40%, n = 26) and facilitating patient partner attendance at conferences (38%, n = 25). The majority of guidance documents (95%) suggested financially compensating (i.e., offering something of monetary value) patient partners for their research contributions. Across guidance documents, the recommended monetary value of financial compensation was relatively consistent and associated with the role played by patient partners and/or specific engagement activities. For instance, the median monetary value for obtaining patient partner feedback (i.e., consultation) was $19/h (USD) (range of $12–$50/h). We identified several documents that guide the compensation of specific populations, including youth and Indigenous peoples. Conclusion Multiple publicly available resources exist to guide researchers, patient partners and institutions in developing tailored patient partner compensation strategies. Our findings challenge the perception that a lack of guidance hinders patient partner financial compensation. Future efforts should prioritise the effective implementation of these compensation strategies to ensure that patient partners are appropriately recognised. Patient or Public Contributions The patient partner coauthor informed protocol development, identified data items, and interpreted findings.

BackgroundThe COVID-19 pandemic accelerated the need to understand citizen acceptance of health surveillance technologies such as contact tracing (CT) apps. Indeed, the success of these apps required widespread public acceptance and the alleviation of concerns about privacy, surveillance, and trust. ObjectiveThis study aims to examine the factors that foster a sense of trust and a perception of privacy in CT apps. Our study also investigates how trust and perceived privacy influence citizens’ willingness to adopt, disclose personal data, and continue to use these apps. MethodsDrawing on privacy calculus and procedural fairness theories, we developed a model of the antecedents and behavioral intentions related to trust and privacy perceptions. We used structural equation modeling to test our hypotheses on a data set collected at 2 time points (before and after the launch of a national CT app). The sample consisted of 405 Irish residents. ResultsTrust in CT apps was positively influenced by propensity to trust technology (β=.074; P=.006), perceived need for surveillance (β=.119; P

Plain English summary We interviewed 10 individuals associated with studies that were funded through the Ontario Strategy for Patient Oriented Research (SPOR) Unit. We asked them about how they had engaged patients, families or caregivers in their study, how this engagement had influenced their study, the challenges they faced, and advice for other researchers considering engaging with patients, families and caregivers. We found that patients had been engaged in a variety of ways and at different times. The changes brought about by the patient engagement varied between studies but tended to reflect an improvement in how relevant the study was to patients. Researchers also shared how engagement with patients, families, and caregivers had changed their approaches to future research. Key challenges facing researchers included finding partners that were appropriate for the study, as well making sure that the approach to engagement overcame issues such as financial or logistical barriers that could prevent patients, families or caregivers from partnering with the study.

Plain English summary Background Partnering with patients, caregivers and members of the public to co-develop and co-conduct research is becoming more accepted and prevalent. However, it is unclear how researchers recognize patient partners for their contributions to research projects. In this publication we outline a series of three studies that will help us better understand when and how patient partners are being financially compensated for their involvement. Methods First, we will conduct a review of the literature to identify an international group of researchers that engage patients as research partners. Evaluating these studies will give us an idea about how often patient partners are compensated, and the methods of compensation being used (e.g. offered gifts, cash, etc.). Second, we will survey researchers and institutions who have experience with patient engagement to ask them for more details about their experiences with patient partner compensation (i.e. challenges that they have encountered and their attitudes). Third, we will conduct another review to identify any guidance documents or policies that can help guide researchers through the processes of financially compensating patient partners. We will provide a summary of all of these guidance documents so that researchers, patient partners, and institutions have a one-stop-shop of resources. Discussion We hope that our three studies will inform and help researchers and patient partners navigate the processes for compensating patient engagement in research.

Globalisation, technological advances, liberalisation of financial markets, and changing consumer behaviour are transforming banking profoundly. Under the EU Payment Services Directive 2 (PSD2), incumbent banks must open up their data, processes, and business functionalities to customers and third parties including rivals. It is critical to understand consumer behaviour post-PSD2, and the potential impact of PSD2 on the functioning of the retail banking and financial services market. In this preliminary study of 244 consumers from six European countries, we explore the role of social influence, facilitating conditions, perceived risk, and effort and performance expectancy in order to unravel the determinants of consumers’ acceptance of account information services (AIS) as provisioned under PSD2, which provide consolidated bank account information for consumers with multiple bank accounts across multiple banking institutions. Our findings suggest that the competing influences of (a) positive perceptions such as social influence, facilitating conditions, and performance expectancy, and (b) negative perceptions related to risk, sway consumers’ intentions to adopt AIS.

Background: Refugees and asylum seekers often experience traumatic events resulting in a high prevalence of post-traumatic stress disorder (PTSD). Undiagnosed PTSD can have detrimental effects on resettlement outcomes. Immigration medical exams provide an opportunity to screen for mental health conditions in refugee and asylum seeker populations and provide links to timely mental health care. Objective: To assess the diagnostic accuracy of screening tools for PTSD in refugee and asylum seeker populations. Methods: We systematically searched Medline, Embase, PsycINFO, CENTRAL and CINAHL up to 29 September 2022. We included cohort-selection or cross-sectional study designs that assessed PTSD screening tools in refugee or asylum seeker populations of all ages. All reference standards were eligible for inclusion, with a clinical interview considered the gold standard. We selected studies and extracted diagnostic test accuracy data in duplicate. Risk of bias and applicability concerns were addressed using QUADAS-2. We meta-analyzed findings using a bivariate random-effects model. We partnered with a patient representative and a clinical psychiatrist to inform review development and conduct. Results: Our review includes 28 studies (4,373 participants) capturing 16 different screening tools. Nine of the 16 tools were developed specifically for refugee populations. Most studies assessed PTSD in adult populations, but three included studies focused on detecting PTSD in children. Nine studies looked at the Harvard Trauma Questionnaire (HTQ) with diagnostic cut-off points ranging from 1.17 to 2.5. Meta-analyses revealed a summary point sensitivity of 86.6% (95%CI 0.791; 0.917) and specificity of 78.9% (95%CI 0.639; 0.888) for these studies. After evaluation, we found it appropriate to pool other screening tools (Posttraumatic Stress Disorder Checklist, the Impact of Event Scale, and the Posttraumatic Diagnostic Scale) with the HTQ. The area under the curve for this model was 79.4%, with a pooled sensitivity of 86.2% (95%CI 0.759; 0.925) and a specificity of 72.2% (95%CI 0.616; 0.808). Conclusions: Our review identified several screening tools that perform well among refugees and asylum seekers, but no single tool was identified as being superior. The Refugee Health Screener holds promise as a practical instrument for use in immigration medical examinations because it supports the identification of PTSD, depression, and anxiety across diverse populations. Future research should consider tool characteristics beyond sensitivity and specificity to facilitate implementation in immigration medical exams. Registration: Open Science Framework: 10.17605/OSF.IO/PHNJV

Abstract Aim Though patient engagement in clinical research is growing, recent reports suggest few clinical trials report on such activities. To address this gap, we describe our approach to patient engagement in the development of a clinical trial protocol to assess a new immunotherapy for blood cancer (chimeric antigen receptor T-cell therapy, CAR-T cell therapy). Methods Our team developed a clinical trial protocol by working with patient partners from inception. Two patient partners with lived blood cancer experience were identified through referrals from our team’s professional network and patient organization contacts. Our patient partners were onboarded to the team and engaged in several studies conducted to develop the clinical trial protocol, including a systematic review of the existing literature on the therapy, patient interviews and a survey to obtain perspectives on barriers and enablers to participating in the trial, an early economic analysis, and a retrospective cohort study. Results Engaging patient partners enhanced our research in ways that would not have otherwise occurred. By selecting patient important outcomes for data collection, our partners helped flag that quality of life and health utility measures have not been reported in previous CAR-T cell therapy trials for blood cancer. Our partners also co-developed a non-technical summary of the systematic review that summarized results in an accessible manner. Our patient partners reviewed interview and survey questions, to improve the language and appropriateness; provided recruitment suggestions; and provided a patient perspective on the results, thereby confirming the importance of findings. Input was also obtained on costs for the early economic analysis. Our patient partners identified costs that may be a burden to both patients and caregivers during a trial and helped to confirm that the overall structure of the economic model reflected the patient care pathway. Our patient partners also shared their diagnosis and treatment stories, which helped to provide the research team with insight into this experience. Conclusions Contributions by our patient partners were invaluable to each component study, as well as the overall development of the trial protocol. We plan to use this approach in the future in order to meaningfully engage patients in the development of other clinical trials; we also hope that by reporting our methods this will help other research teams to do the same. Trial registration Affiliated with the development of NCT03765177 .

Background: ‘Patient engagement’ involves meaningful collaboration between researchers and ‘patient partners’ to co-create research. It helps ensure that research being conducted is relevant to its ultimate end-users. Although patient engagement within clinical research has been well documented, the prevalence and effects of patient engagement in translational preclinical laboratory research remain unclear. The aim of this scoping review is to present current patient engagement activities reported in preclinical laboratory research. Methods: MEDLINE, Embase, and grey literature were systematically searched from inception to April 2021. Studies that described or investigated patient engagement in preclinical laboratory research were included. Patient engagement activities where patients (i.e. patients, family members, caregivers or community members) provided input, or consultation on at least one element of the research process were eligible for inclusion. Study characteristics and outcomes were extracted and organized thematically. Findings: 32 reports were included (30 primary studies, 1 narrative review, and 1 researcher guide). Most studies engaged patients at the education or priority setting stages (n=26). The most frequently reported benefit of patient engagement was ‘providing a mutual learning opportunity’. Reported barriers to patient engagement reflected concerns around ‘differences in knowledge and research experience’ and how this may challenge communication and limit meaningful collaboration. Interpretation: Patient engagement is feasible and beneficial for preclinical laboratory research. Future work should focus on assessing the impacts of patient engagement in this area of research.

Abstract The lack of transparency surrounding cloud service provision makes it difficult for consumers to make knowledge based purchasing decisions. As a result, consumer trust has become a major impediment to cloud computing adoption. Cloud Trust Labels represent a means of communicating relevant service and security information to potential customers on the cloud service provided, thereby facilitating informed decision making. This research investigates the potential of a Cloud Trust Label system to overcome the trust barrier. Specifically, it examines the impact of a Cloud Trust Label on consumer perceptions of a service and cloud service provider trustworthiness and trust in the cloud service and cloud service provider. An experimental study was carried out with a sample of 227 business decision makers with data collected before exposure to the label to examine initial perceptions and after exposure to the label to examine any change in perceptions and attitudes. As hypothesised, the results suggest that Cloud Trust Labels that contain positive information can have a positive impact on trust and trustworthiness while Cloud Trust Labels that contain negative information have a negative impact. The practical implications of this new method of communicating trustworthiness online are discussed and recommendations are made for future research.

In an effort to better utilize published evidence obtained from animal experiments, systematic reviews of preclinical studies are increasingly more common-along with the methods and tools to appraise them (e.g., SYstematic Review Center for Laboratory animal Experimentation [SYRCLE's] risk of bias tool). We performed a cross-sectional study of a sample of recent preclinical systematic reviews (2015-2018) and examined a range of epidemiological characteristics and used a 46-item checklist to assess reporting details. We identified 442 reviews published across 43 countries in 23 different disease domains that used 26 animal species. Reporting of key details to ensure transparency and reproducibility was inconsistent across reviews and within article sections. Items were most completely reported in the title, introduction, and results sections of the reviews, while least reported in the methods and discussion sections. Less than half of reviews reported that a risk of bias assessment for internal and external validity was undertaken, and none reported methods for evaluating construct validity. Our results demonstrate that a considerable number of preclinical systematic reviews investigating diverse topics have been conducted; however, their quality of reporting is inconsistent. Our study provides the justification and evidence to inform the development of guidelines for conducting and reporting preclinical systematic reviews.

While information technology is playing a significant transformative role in virtually every industry, within the agriculture sector, family-operated farming enterprises have been slow to adopt IT solutions to manage their operations. This study adopts a sequential mixed-methods research design to examine the pre- and post-adoption phases of farmers’ use of a mobile digital platform for farm management. Our findings show that farmers’ initial acceptance of a mobile digital platform for farm management is shaped by social influence, which mediates the impact of performance and effort expectancy. Post-adoption continued use of the digital platform is influenced directly by performance and effort expectancy and indirectly by trust beliefs and social influence. Perceived work impediment indirectly influences post-adoption acceptance via effort expectancy. Our study untangles the direct and indirect influences of positive and negative perceptions on farmers’ acceptance of a new innovative AgriTech digital platform in these different phases.

High performance computing (HPC) is widely recognized as a key enabling technology for advancing scientific progress, industrial competitiveness, national and regional security, and the quality of human life. Notwithstanding this contribution, the large upfront investment and technical expertise required has limited the adoption of HPC to large organizations, government bodies, and third level institutions. Recent advances in cloud computing and telecommunications have the potential to overcome the historical issues associated with HPC through increased flexibility and efficiency, and reduced capital and operational expenditure. This study seeks to advance the literature on technology adoption and assimilation in the under-examined HPC context through a mixed methods approach. Firstly, the determinants of cloud computing adoption for HPC are examined through a survey of 121 HPC decision makers worldwide. Secondly, a modified Delphi method was conducted with 13 experts to identify and prioritize critical issues in the adoption of cloud computing for HPC. Results from the quantitative phase suggest that only organizational and human factors significantly influence cloud computing adoption decisions for HPC. While security was not identified as a significant influencer in adoption decisions, qualitative research findings suggest that data privacy and security issues are an immediate and long-term concern.