Making a Difference: Planning for Engaged Participation in Environmental Research.
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ABSTRACT:
SUBMITTER: Ferguson DB
PROVIDER: S-EPMC8789721 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundThere is a longstanding concern about the accuracy of surrogate consent in representing the health care and research preferences of those who lose their ability to decide for themselves. We sought informed, deliberative views of the older general public (?50 years old) regarding their willingness to participate in dementia research and to grant leeway to future surrogates to choose an option contrary to their stated wishes.Methodology/principal findings503 persons aged 50+ recruited by random digit dialing were randomly assigned to one of three groups: deliberation, education, or control. The deliberation group attended an all-day education/peer deliberation session; the education group received written information only. Participants were surveyed at baseline, after the deliberation session (or equivalent time), and one month after the session, regarding their willingness to participate in dementia research and to give leeway to surrogates, regarding studies of varying risk-benefit profiles (a lumbar puncture study, a drug randomized controlled trial, a vaccine randomized controlled trial, and an early phase gene transfer trial). At baseline, 48% (gene transfer scenario) to 92% (drug RCT) were willing to participate in future dementia research. A majority of respondents (57-71% depending on scenario) were willing to give leeway to future surrogate decision-makers. Democratic deliberation increased willingness to participate in all scenarios, to grant leeway in 3 of 4 scenarios (lumbar puncture, vaccine, and gene transfer), and to enroll loved ones in research in all scenarios. On average, respondents were more willing to volunteer themselves for research than to enroll their loved ones.Conclusions/significanceMost people were willing to grant leeway to their surrogates, and this willingness was either sustained or increased after democratic deliberation, suggesting that the attitude toward leeway is a reliable opinion. Eliciting a person's current preferences about future research participation should also involve eliciting his or her leeway preferences.
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Project description:The Intergovernmental Science-Policy Platform on Biodiversity and Ecosystem Services(IPBES) strengthens the science-policy interface by producing scientific assessments on biodiversity and ecosystem services to inform policy. IPBES fosters knowledge exchange across disciplines, between researchers and other knowledge holders, practitioners, societal actors and decision makers working at different geographic scales. A number of avenues for participation of stakeholders across the four functions if IPBES exist. Stakeholders come from diverse backgrounds, including Indigenous Peoples and local communities, businesses, and non-governmental organization. They represent multiple sources of information, data, knowledge, and perspectives on biodiversity. Stakeholder engagement in IPBES seeks to 1. communicate, disseminate, and implement the findings of IPBES products; 2. Develop guidelines for biodiversity conservation within member countries; and 3. create linkages between global policy and local actors - all key to the implementation of global agreements on biodiversity. This paper reflects on the role of stakeholders in the first work programme of IPBES (2014-2018). It provides an overview of IPBES processes and products relevant to stakeholders, examines the motivation of stakeholders to engage with IPBES, and explores reflections by the authors (all active participants on the platform) for improved stakeholder engagement and contributions to future work of the platform.
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Project description:Community-engaged research is understood as existing on a continuum from less to more community engagement, defined by participation and decision-making authority. It has been widely assumed that more is better than less engagement. However, we argue that what makes for good community engagement is not simply the extent but the fit or alignment between the intended approach and the various contexts shaping the research projects. This article draws on case studies from three Community Engagement Cores (CECs) of NIEHS-funded Environmental Health Science Core Centers (Harvard University, UC Davis and University of Arizona,) to illustrate the ways in which community engagement approaches have been fit to different contexts and the successes and challenges experienced in each case. We analyze the processes through which the CECs work with researchers and community leaders to develop place-based community engagement approaches and find that different strategies are called for to fit distinct contexts. We find that alignment of the scale and scope of the environmental health issue and related research project, the capacities and resources of the researchers and community leaders, and the influences of the sociopolitical environment are critical for understanding and designing effective and equitable engagement approaches. These cases demonstrate that the types and degrees of alignment in community-engaged research projects are dynamic and evolve over time. Based on this analysis, we recommend that CBPR scholars and practitioners select a range of project planning and management techniques for designing and implementing their collaborative research approaches and both expect and allow for the dynamic and changing nature of alignment.
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Project description:Mary Elizabeth is an Oncology Clinical Nurse Specialist from Memorial Sloan-Kettering Cancer Center in New York City, New York. She graduated from University of Delaware in 1985, with a Bachelor's degree in nursing and followed in 1989, with a Masters of Nursing from Columbia University specializing in oncology. Mary Elizabeth works as a Clinical Nurse Specialist in Memorial Sloan Kettering's ambulatory medical oncology consultative services. Her role includes modeling professional practice to the nurses of the services for which she has responsibility including mentoring and precepting nurses who are new to a practice, coordinating and evaluating their clinical experiences, and overseeing their development in the oncology nursing specialty and the ambulatory clinical practice role. Mary Elizabeth regularly "walks the walk" filling in and assisting in busy practices; this helps her maintain knowledge of the latest advances in disease management as well as experience firsthand the challenges of the ambulatory nursing role. Over the past few years, she has been practicing within MSK's busy and growing world - renowned retinoblastoma (RB) clinic. Mary Elizabeth has presented on RB nationally and at international conferences in the hopes of bringing this curable disease to the attention of nurses worldwide. Early diagnosis and early access to treatment can save lives, eyes, and vision.
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Project description:The participation of general practitioners (GPs) in primary care research is variable and often poor. We aimed to develop a substantive and empirical theoretical framework to explain GPs' decision-making process to participate in research.We used the grounded theory approach to construct a substantive theory to explain the decision-making process of GPs to participate in research activities. Five in-depth interviews and four focus group discussions were conducted among 21 GPs. Purposeful sampling followed by theoretical sampling were used to attempt saturation of the core category. Data were collected using semi-structured open-ended questions. Interviews were recorded, transcribed verbatim and checked prior to analysis. Open line-by-line coding followed by focus coding were used to arrive at a substantive theory. Memoing was used to help bring concepts to higher abstract levels.The GPs' decision to participate in research was attributed to their inner drive and appreciation for primary care research and their confidence in managing their social and research environments. The drive and appreciation for research motivated the GPs to undergo research training to enhance their research knowledge, skills and confidence. However, the critical step in the GPs' decision to participate in research was their ability to align their research agenda with priorities in their social environment, which included personal life goals, clinical practice and organisational culture. Perceived support for research, such as funding and technical expertise, facilitated the GPs' participation in research. In addition, prior experiences participating in research also influenced the GPs' confidence in taking part in future research.The key to GPs deciding to participate in research is whether the research agenda aligns with the priorities in their social environment. Therefore, research training is important, but should be included in further measures and should comply with GPs' social environments and research support.
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Project description:Health research has relied on ethical principles, such as those of the Belmont Report, to protect the rights and well-being of research participants. Community-based participatory research (CBPR), however, must also consider the rights and well-being of communities. This requires additional ethical considerations that have been extensively discussed but not synthesized in the CBPR literature. We conducted a comprehensive thematic literature review and summarized empirically grounded discussions of ethics in CBPR, with a focus on the value of the Belmont principles in CBPR, additional essential components of ethical CBPR, the ethical challenges CBPR practitioners face, and strategies to ensure that CBPR meets ethical standards. Our study provides a foundation for developing a working definition and a conceptual model of ethical CBPR.
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