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Understanding and Addressing Problems in Research Collaboration: A Qualitative Interview Study From a Self-Governance Perspective.

ABSTRACT: For collaborative research to be successful, understanding and solving collaboration problems is of paramount importance. However, theory-driven research on this issue at a general level is scarce. Drawing from two micro-oriented approaches (i.e., club theory and commons theory) and relying on self-governance as the basic principle for addressing collaboration problems, we aim to develop theoretically informed, concise and generalizable catalogs of problems and solutions based on the experiences and expectations of research collaboration participants. A series of expert interviews (N = 18) were conducted with leading researchers in Germany. Seven typical problems (e.g., lack of commitment or fairness) and 12 possible solutions (e.g., continuous evaluation or creating cognitive common ground) that can be applied within the self-regulatory framework were identified. The results provide a useful framework to further investigate problems and solutions as well as interlinkages between the two, and to improve research collaboration.

SUBMITTER: Meißner F

PROVIDER: S-EPMC8864336 | biostudies-literature | 2021

REPOSITORIES: biostudies-literature

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Understanding and Addressing Problems in Research Collaboration: A Qualitative Interview Study From a Self-Governance Perspective.

Meißner Florian F Weinmann Carina C Vowe Gerhard G

Frontiers in research metrics and analytics 20220203

For collaborative research to be successful, understanding and solving collaboration problems is of paramount importance. However, theory-driven research on this issue at a general level is scarce. Drawing from two micro-oriented approaches (i.e., club theory and commons theory) and relying on self-governance as the basic principle for addressing collaboration problems, we aim to develop theoretically informed, concise and generalizable catalogs of problems and solutions based on the experiences ...[more]

PMID: 35224422

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Project description:BACKGROUND:Barth syndrome (BTHS, OMIM 302060) is a rare, life-threatening, x-linked genetic disorder that occurs almost exclusively in males and is characterized by cardiomyopathy, neutropenia, skeletal muscle myopathy primarily affecting larger muscles, and shorter stature in youth. A greater number of individuals with BTHS are now surviving into adulthood due to advancements in diagnosis and disease management. Given these improvements in life expectancy, understanding the disease experience over time has become increasingly important to individuals with the condition, treatment developers, and regulatory agencies. A study was conducted to explore the experience of BTHS from the perspective of adult males at least 35 years of age with the condition via in-depth qualitative interviews. RESULTS:Findings showed that adults with BTHS experienced a variety of signs/symptoms with variable onset and severity throughout their lives, the most frequently reported being the symptoms of tiredness, muscle weakness, and a fast and/or irregular heart rate, and the sign of short stature in youth. These signs/symptoms negatively impacted individuals' emotional, physical, social, and role functioning. Tiredness and weakness impacted some individuals' physical functioning from an early age and into adulthood. These symptoms generally worsened over time, increasingly interfering with individuals' ability to fully participate in paid and unpaid labor and to partake in family and leisure activities. CONCLUSIONS:This research complements recent studies characterizing the potentially degenerative and progressive nature of BTHS and can encourage future research into the natural history and progression of BTHS in untreated individuals. Participants' interview responses revealed a range of symptoms and the potential for multiple impacts on individuals' physical, social, emotional, and role functioning as a result of BTHS symptoms, yet also revealed variability in severity of experience as well as the possibility of resilience and adaptation to the condition.

Project description:BackgroundSince COVID-19 emerged in 2020, the promotion of health equity, including in research, has further been challenged worldwide by both global health governance (GHG) processes and decisions, and national public health control measures. These global and national decisions have also led to the 'covidization' of health research agendas where resources have been massively channelled to address COVID-19, especially during the first years of the pandemic. This situation could potentially result in current and future population health research priorities not explicitly tackling equity as a central tenet. The study objective examined how and to what extent the COVID-19-related GHG architecture is affecting population health research priorities in Canada.MethodsWe conducted a multilevel qualitative study informed by the intersectionality-based policy analysis and multiple streams frameworks. We collected and thematically analysed data from four groups of respondents (n = 35: researchers, research funders and global and public health research institutes in Canada, and WHO/international actors) and an interactive feedback workshop (n = 40 participants).ResultsStudy findings generated four main themes. First, both global and national COVID-19 responses failed to address equity considerations, especially among populations in situations of vulnerability and marginalisation. Second, the integrated examination of funding, equity, and accountability was judged as necessary determinants of GHG and population health research priorities in Canada. Third, contrary to common beliefs about COVID-19, the consequences were not all negative, but they were also positive and unintended, and lessons can be learned. Fourth, study respondents proposed multiple recommendations to address inequities in the complex intersection between COVID-19-related GHG and population health research in Canada.ConclusionThis study provides substantial evidence of the multilayered and complex intersection between COVID-19-related GHG and population health research priorities in Canada. Although the window of opportunity was slim according to study respondents, there was still a unique collective effort to address COVID-19-related socioeconomic and health inequities by considering the numerous recommendations proposed by the four groups of study respondents. These recommendations can directly contribute to improving knowledge of global and national population health and equity research strategies in the context of an evolving pandemic and for policy- and decision-makers to adjust and rectify the course of global and public health governance.

Project description:ObjectivesParticipant-led research (PLR) is a rapidly developing form of citizen science in which individuals can create personal and generalisable knowledge. Although PLR lacks a formal framework for ethical review, participants should not be excused from considering the ethical implications of their work. Therefore, a PLR cohort consisting of 24 self-trackers aimed to: (1) substitute research ethics board procedures with engagement in ethical reflection before and throughout the study and (2) draft principles to encourage further development of the governance and ethical review of PLR.MethodsA qualitative case study method was used to analyse the ethical reflection process. Participants discussed study risks, risk management strategies and benefits pre-project, during a series of weekly webinars, via individual meetings with the participant-organisers, and during semi-structured interviews at project completion. Themes arising from discussions and interviews were used to draft prospective principles to guide PLR.ResultsData control, aggregation and identifiability were the most common risks identified. These were addressed by a commitment to transparency among all participants and by establishing participant control via self-collection and self-management of data. Group discussions and resources (eg, assistance with experimental design and data analysis) were the most commonly referenced benefits of participation. Additional benefits included greater understanding of one's physiology and greater ability to structure an experiment. Nine principles were constructed to encourage further development of ethical PLR practices. All participants expressed interest in participating in future PLR.ConclusionsProjects involving a small number of participants can sustain engagement in ethical reflection among participants and participant-organisers. PLR that prioritises transparency, participant control of data and ongoing risk-to-benefit evaluation is compatible with the principles that underlie traditional ethical review of health research, while being appropriate for a context in which citizen scientists play the central role.

Project description:BackgroundData Sharing is widely recognised as crucial for accelerating scientific research and improving its quality. However, data sharing is still not a common practice. Funding agencies tend to facilitate the sharing of research data by both providing incentives and requiring data sharing as part of their policies and conditions for awarding grants. The goal of our article is to answer the following question: What challenges do international funding agencies see when it comes to their own efforts to foster and implement data sharing through their policies?MethodsWe conducted a series of sixteen guideline-based expert interviews with representatives of leading international funding agencies. As contact persons for open science at their respective agencies, they offered their perspectives and experiences concerning their organisations' data sharing policies. We performed a qualitative content analysis of the interviews and categorised the challenges perceived by funding agencies.ResultsWe identify and illustrate six challenges surrounding data sharing policies as perceived by leading funding agencies: The design of clear policies, monitoring of compliance, sanctions for non-compliance, incentives, support, and limitations for funders' own capabilities. However, our interviews also show how funders approach potential solutions to overcome these challenges, for example by coordinating with other agencies or adjusting grant evaluation metrics to incentivise data sharing.Discussion and conclusionOur interviews point to existing flaws in funders' data sharing policies, such as a lack of clarity, a lack of monitoring of funded researchers' data sharing behaviour, and a lack of incentives. A number of agencies could suggest potential solutions but often struggle with the overall complexity of data sharing and the implementation of these measures. Funders cannot solve each challenge by themselves, but they can play an active role and lead joint efforts towards a culture of data sharing.

Project description:BACKGROUND:Wearables, fitness apps, and patient home monitoring devices are used increasingly by patients and other individuals with lifestyle challenges. All Danish general practitioners (GPs) use digital health records and electronic health (eHealth) consultations on a daily basis, but how they perceive the increasing demand for lifestyle advice and whether they see eHealth as part of their lifestyle support should be explored further. OBJECTIVE:This study aimed to explore GPs' perspectives on eHealth devices and apps and the use of eHealth in supporting healthy lifestyle behavior for their patients and themselves. METHODS:A total of 10 (5 female and 5 male) GPs were recruited by purposive sampling, aged 38 to 69 years (mean 51 years), of which 4 had an urban uptake of patients and 6 a rural uptake. All of them worked in the region of Southern Denmark where GPs typically work alone or in partnership with 1 to 4 colleagues and all use electronic patient health records for prescription, referral, and asynchronous electronic consultations. We performed qualitative, semistructured, individual in-depth interviews with the GPs in their own office about how they used eHealth and mHealth devices to help patients challenged with lifestyle issues and themselves. We also interviewed how they treated lifestyle-challenged patients in general and how they imagined eHealth could be used in the future. RESULTS:All GPs had smartphones or tablets, and everyone communicated on a daily basis with patients about disease and medicine via their electronic health record and the internet. We identified 3 themes concerning the use of eHealth: (1) how eHealth is used for patients; (2) general practitioners' own experience with improving lifestyle and eHealth support; and (3) relevant coaching techniques for transformation into eHealth. CONCLUSIONS:GPs used eHealth frequently for themselves but only infrequently for their patients. GPs are familiar with behavioral change techniques and are ready to use them in eHealth if they are used to optimize processes and not hinder other treatments. Looking ahead, education of GPs and recognizing patients' ability and preference to use eHealth with regard to a healthy living are needed.

Dataset Information

Understanding and Addressing Problems in Research Collaboration: A Qualitative Interview Study From a Self-Governance Perspective.

Publications

Understanding and Addressing Problems in Research Collaboration: A Qualitative Interview Study From a Self-Governance Perspective.

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