Engaging Stakeholders in a Pragmatic Trial of Home-Delivered Meals for Persons with Dementia

Gathering stakeholder feedback is essential to designing and implementing relevant and actionable research. Additionally, stakeholders, particularly those directly impacted by an intervention, bring unique insights and experiences. This paper presents the process and findings of a research endeavor to co-design a pragmatic clinical trial with a Stakeholder Advisory Panel (SAP) in an effort to understand facilitators and barriers to conducting the research and implementing study findings. The proposed trial compares the impact of frozen, drop-shipped meals versus daily home-delivered meals provided by Meals on Wheels (MOW) programs on the ability of individuals living with dementia to age in place. We recruited nine SAP members, who were compensated for their time. The SAP is composed of a) MOW clients with dementia, b) family members of MOW clients with dementia, c) paid or volunteer MOW drivers, and d) MOW staff. A research team member facilitated two 90-minute meetings with the SAP members via Zoom. The topics of the meetings included potential benefits and challenges with each mode of meal delivery, the importance of the primary outcome (time to nursing home placement), topics of interest to include in interviews with clients and caregivers, and how participants would explain the study to a friend. Audio of the Zoom meetings was transcribed, and meeting summaries were shared with the SAP. Benefits of forming and engaging a SAP, as well as key lessons learned from SAP members and how recommendations were reflected in changes to the study protocol will be discussed.

Twelve months into a feasibility trial: reflections on three experiences of public and patient involvement in research

In this Open Letter we present reflections from three different perspectives on the integration of public and patient involvement (PPI) in a research trial. We reflect on the experience of having a patient employed as a contract researcher, with no prior research experience, on a feasibility trial of cognitive rehabilitation in multiple sclerosis. This Open Letter is written by the PPI research team member with reflections from a researcher on the trial and the principal investigator. We will discuss some of the changes made and the impacts that have been resulted from of PPI input into the trial. We focus on PPI involvement in participant recruitment, the development of trial material, integration of PPI along the research cycle, and collaboration. We hope that this Open Letter will encourage principal investigators and groups to include PPI members as part of the research team and help patients and members of the public understand what the experience of PPI members is like.

Care and Precision Medicine Research in the Time of COVID-19

Purpose: Enhancing the bidirectional benefit of precision medicine research in­frastructure may advance equity in research participation for diverse groups. This study explores the use of research infrastructure to provide human-centered COVID-19 resources to participants as a part of their research participation.Design: The All of Us New England (AoUNE) consortium research team devel­oped standardized check-in telephone calls to ask participants about their well-being and share COVID-19 resources.Participants: A total of 20,559 partici­pants in the AoUNE consortium received a COVID-19 check-in call.Methods: Research assistants called partici­pants during March-April 2020, distributed COVID-19 resources to interested partici­pants, and subsequently rated call tone.Results: Of the total cohort participants called, 8,512 (41%) spoke with a research team member. The majority of calls were rated as positive or neutral; only 3% rated as negative. African American and Black as well as Hispanic populations requested COVID-19 resources at higher rates than other groups.Conclusion: Calls made to AoUNE participants were received positively by diverse groups. These findings may have implications for participant-centered en­gagement strategies in precision medicine research.Ethn Dis. 2021;31(3):407-410; doi:10.18865/ed.31.3.407

Community-Based Research and Ethics: From Ethics Forms to Honouring Relations

What is ethical in research and what are our responsibilities as researchers? Unless you have designed a research project and completed ethics requirements yourself it may be difficult to know how the process works, especially in community-based research. As a Research Assistant on a project, you might not know what your own responsibilities are and why it might even matter to you. In this session, we will consider the ethical responsibilities of the research team when participating in community-based research projects. You’ll see the big picture of the ethics requirements in research in Canada linked to Universities and communities. Through working through a case-study, we will think more specifically about what it means to recognize and honour our ethical responsibilities to research participants as a research team member.

Guiding Principles for Community Engagement: Reflections on a School-Based Sustainability Project

This article describes an action research project in which community psychologists worked with a school community to promote environmentally sustainable practices. Our research team had five guiding principles: strengths-based, empowerment, role modeling, communication, and measurement and feedback. Here we describe a phenomenological study of how we experienced our principles and how key participants from the school perceived our professional practice. Each research team member completed a self-reflective survey and key staff and students from the school were interviewed. Amongst other benefits, the principles were valuable in promoting coherence within the research team, guiding decision-making and providing a framework for critical reflection. Recommendations are given for researchers and community practitioners interested in initiating sustainability projects with local organizations or using a similar principles-based approach in other collaborative endeavors.

THE HUMAN FACTOR IN RESEARCH PROJECTS CONDUCTED AT POLISH UNIVERSITIES

This article is based on research conducted at the Wroclaw University of Science and Technology and was financed by the National Centre of Science with the purpose of identifying success and failure factors for university research projects. The research shows that the human factor was crucial in determining the outcome of university research projects. This article presents the analysis and results of selected aspects of a research project into human resource management. The study involves in-depth interviews with 40 project managers of university research projects. Based on interview responses, the following features are evaluated: main reasons for starting research projects, different methods of selecting the research project manager, research team member selection criteria, management styles used by research projects managers, and crucial problems connected with the human factor that occurred in the research projects being analyzed.