Strategies to enhance recruitment and consent to intensive care studies: a qualitative study with researchers and patient-public involvement contributors.
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ABSTRACT: Objective
Clinical trials and studies in intensive care units (ICUs) have complex consent processes and often encounter problems in recruiting patients. By interviewing research team members about the challenges in critical care research, we aimed to identify strategies to enhance recruitment and consent to ICU studies.Methods
Semistructured interviews with UK-based researchers (N=17) and patient-public involvement (PPI) contributors (N=8) with experience of ICU studies. Analysis of transcripts of audio-recorded interviews drew on thematic approaches.Results
Seven themes were identified. Participants emphasised the need for substitute decision-making processes in critical care studies, yet some researchers reported that research ethics committees (RECs) were reluctant to approve such processes. Researchers spoke about the potential benefits of research without prior consent (RWPC) for studies with narrow recruitment windows but believed RECs would not approve them. Participants indicated that the activity of PPI contributors was limited in critical care studies, though researchers who had involved PPI contributors more extensively were clear that their input when designing consent processes was important. Researchers and PPI contributors pointed to resource and staffing limitations as barriers to patient recruitment. Researchers varied in whether and how they used professional consultees as substitute decision-makers, in whether they approached families by telephone to discuss research and in whether they disclosed details of research participation to bereaved relatives.Conclusion
Critical care research could benefit from RECs having expertise in consent processes that are suited to this setting, better staffing at research sites, more extensive PPI and an evidence base on stakeholder perspectives on critical care research processes. Guidance on professional consultee processes, telephoning relatives to discuss research, RWPC and disclosure of research participation to bereaved relatives could help to harmonise practice in these areas and enhance recruitment and consent to critical care studies.
SUBMITTER: Paddock K
PROVIDER: S-EPMC8461270 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectivesThe University of Minnesota (UMN) Health Sciences Libraries conducted a needs assessment of public health researchers as part of a multi-institutional study led by Ithaka S+R. The aims of the study were to capture the evolving needs, opportunities, and challenges of public health researchers in the current environment and provide actionable recommendations. This paper reports on the data collected at the UMN site.MethodsParticipants (n=24) were recruited through convenience sampling. One-on-one interviews, held November 2016 to January 2017, were audio-recorded. Qualitative analyses were conducted using NVivo 11 Pro and were based on the principles of grounded theory.ResultsThe data revealed that a broad range of skill levels among participants (e.g., literature searching) and areas of misunderstanding (e.g., current publishing landscape, open access options). Overall, data management was an afterthought. Few participants were fully aware of the breadth of librarian knowledge and skill sets, although many did express a desire for further skill development in information science.ConclusionsLibraries can engage more public health researchers by utilizing targeted and individualized marketing regarding services. We can promote open science by educating researchers on publication realities and enhancing our data visualization skills. Libraries might take an institution-wide leadership role on matters of data management and data policy compliance. Finally, as team science emerges as a research priority, we can offer our networking expertise. These support services may reduce the stresses that public health researchers feel in the current research environment.
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Project description:BackgroundSmartphones are being increasingly used for research owing to their multifunctionality and flexibility, and crowdsourced research using smartphone applications (apps) is effective in the early detection and management of chronic diseases. We developed the AllerSearch app to gather real-world data on individual subjective symptoms and lifestyle factors related to hay fever. This study established a foundation for interactive research by adopting novel, diverse perspectives accrued through implementing the principles of patient and public involvement (PPI) in the development of our app.MethodsPatients and members of the public with a history or family history of hay fever were recruited from November 2019 to December 2021 through a dedicated website, social networking services, and web briefing according to the PPI Guidebook 2019 by the Japan Agency for Medical Research and Development. Nine opinion exchange meetings were held from February 2020 to December 2021 to collect opinions and suggestions for updating the app. After each meeting, interactive evaluations from PPI contributors and researchers were collected. The compiled suggestions were then incorporated into the app, establishing an active feedback loop fed by the consistently interactive infrastructure.ResultsFour PPI contributors (one man and three women) were recruited, and 93 items were added/changed in the in-app survey questionnaire in accordance with discussions from the exchange meetings. The exchange meetings emphasized an atmosphere and opportunity for participants to speak up, ensuring frequent opportunities for them to contribute to the research. In March 2020, a public website was created to display real-time outcomes of the number of participants and users' hay-fever-preventative behaviors. In August 2020, a new PPI-implemented AllerSearch app was released.ConclusionsThis study marks the first research on clinical smartphone apps for hay fever in Japan that implements PPI throughout its timeline from research and development to the publication of research results. Taking advantage of the distinct perspectives offered by PPI contributors, a step was taken toward actualizing a foundation for an interactive research environment. These results should promote future PPI research and foster the establishment of a social construct that enables PPI efforts in various fields.
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