How to make your research jump off the page: Co-creation to broaden public engagement in medical research.
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ABSTRACT:
SUBMITTER: Finley N
PROVIDER: S-EPMC7489547 | biostudies-literature | 2020 Sep
REPOSITORIES: biostudies-literature
Publications
How to make your research jump off the page: Co-creation to broaden public engagement in medical research.
Finley Nina N Swartz Talia H TH Cao Kevin K Tucker Joseph D JD
PLoS medicine 20200914 9
Nina Finley and co-authors discuss public involvement in planning and reporting medical research. ...[more]
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Project description:BackgroundAs research teams, networks, and institutes, and health, medical, and scientific communities begin to build consensus on the benefits of patient engagement in cancer research, research funders are increasingly looking to meaningfully incorporate patient partnership within funding processes and research requirements. The Canadian Cancer Society (CCS), the largest non-profit cancer research funder in Canada, set out to co-create a patient engagement in cancer research strategy with patients, survivors, caregivers and researchers. The goal of this strategy was to meaningfully and systematically engage with patients in research funding and research activities.MethodsA team of four patient partners with diverse cancer and personal experiences, and two researchers at different career stages agreed to participate as members of the strategy team. Ten staff members participated in supportive roles and to give context regarding different departments of CCS. The strategy was co-developed in 2021/2022 over a series of 7 workshops using facilitation strategies such as ground rules and consensus building, and methods such as Design Thinking. The strategy was subjected to 3 rounds of validation.ResultsThe co-creation and validation process resulted in a multi-faceted strategy with actionable sections, including vision, guiding principles, engagement methods, 13 prioritized engagement activities spanning the spectrum of research funding, and an evaluation framework. The experience of co-creating the strategy was captured using the Patient and Public Engagement Evaluation Tool and revealed a positive, supportive experience.ConclusionsLessons learned included the value of an emphasis on a co-creation process from day one, the utility of facilitation techniques such as ground rules for dialogue, consensus building and Design Thinking, and the importance (and challenge) of designing for and incorporating equity when drafting the strategy. Future work will include implementation and evaluation of the strategy, as well as an examination of further ways to meaningfully and systematically engage diverse voices in research and research funding.
| S-EPMC10542220 | biostudies-literature
Project description:Ecosystems degradation represents one of the major global challenges at the present time, threating people's livelihoods and well-being worldwide. Ecosystem restoration therefore seems no longer an option, but an imperative. Restoration challenges are such that a dialogue has begun on the need to re-shape restoration as a science. A critical aspect of that reshaping process is the acceptance that restoration science and practice needs to be coupled with socio-economic research and public engagement. This inescapably means conveying complex ecosystem's information in a way that is accessible to the wider public. In this paper we take up this challenge with the ultimate aim of contributing to making a step change in science's contribution to ecosystems restoration practice. Using peatlands as a paradigmatically complex ecosystem, we put in place a transdisciplinary process to articulate a description of the processes and outcomes of restoration that can be understood widely by the public. We provide evidence of the usefulness of the process and tools in addressing four key challenges relevant to restoration of any complex ecosystem: (1) how to represent restoration outcomes; (2) how to establish a restoration reference; (3) how to cope with varying restoration time-lags and (4) how to define spatial units for restoration. This evidence includes the way the process resulted in the creation of materials that are now being used by restoration practitioners for communication with the public and in other research contexts. Our main contribution is of an epistemological nature: while ecosystem services-based approaches have enhanced the integration of academic disciplines and non-specialist knowledge, this has so far only followed one direction (from the biophysical underpinning to the description of ecosystem services and their appreciation by the public). We propose that it is the mix of approaches and epistemological directions (including from the public to the biophysical parameters) what will make a definitive contribution to restoration practice.
| S-EPMC5533344 | biostudies-literature
Project description:BackgroundThe rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of a social licence for achieving such ethical governance.Main textWe performed a narrative review of the social licence as presented in the biomedical literature. We used a systematic search and selection process, followed by a critical conceptual analysis. The systematic search resulted in nine publications. Our conceptual analysis aims to clarify how societal permission can be granted to health research projects which rely upon the reuse and/or linkage of health data. These activities may be morally demanding. For these types of activities, a moral legitimation, beyond the limits of law, may need to be sought in order to preserve trust. Our analysis indicates that a social licence encourages us to recognise a broad range of stakeholder interests and perspectives in data-intensive health research. This is especially true for patients contributing data. Incorporating such a practice paves the way towards an ethical governance, based upon trust. Public engagement that involves patients from the start is called for to strengthen this social licence.ConclusionsThere are several merits to using the concept of social licence as a guideline for ethical governance. Firstly, it fits the novel scale of data-related risks; secondly, it focuses attention on trustworthiness; and finally, it offers co-creation as a way forward. Greater trust can be achieved in the governance of data-intensive health research by highlighting strategic dialogue with both patients contributing the data, and the public in general. This should ultimately contribute to a more ethical practice of governance.
| S-EPMC8353823 | biostudies-literature
Project description:Notwithstanding that 'public engagement' is conceptualised differently internationally and in different academic disciplines, higher education institutions largely accept the importance of public engagement with research. However, there is limited evidence on how researchers conceptualise engagement, their views on what constitutes engagement and the communities they would (or would not) like to engage with. This paper presents the results of a survey of researchers in the Open University that sought to gather data to fill these gaps. This research was part of an action research project designed to embed engagement in the routine practices of researchers at all levels. The findings indicate that researchers have a relatively narrow view of public engagement with research and the communities with which they interact. It also identified that very few strategically evaluate their public engagement activities. We conclude by discussing some of the interventions we have introduced with the aim of broadening and deepening future researcher engagement.
| S-EPMC4383503 | biostudies-other
Project description:Ferment: An outreach project using Nanopore 16S amplicon sequencing to investigate fermented foods
| PRJEB29723 | ENA
Project description:The use of research in public health policymaking is one of the prerequisites for successfully implemented health policies which have better population health as an outcome. This policy process is influenced by the actors involved under the policy umbrella, with inter-related contextual factors and specific structural and institutional circumstances. Our study investigates how policymakers' research capacities influence the use of research in the health policy process and identify areas where capacity-building interventions give the most meaning and impact. Furthermore, we investigate policymakers' research engagement and use this to inform public health policy in the public sector in Denmark. We collect and report data using Seeking, Engaging with, and Evaluation Research (SEER) methodology. Policymakers are reported to have research capacity, but it is questionable how those competences have actually been used in policymaking. Decision-makers were often not aware or did not know about the existing organizational tools and systems for research engagement and use and two third of respondents had not been part of any research activities or had any collaboration with researchers. Overall, research use in public health policymaking and evaluation was limited. As a conclusion, we propose that capacity-building interventions for increasing research use and collaboration in EIPM should be context-oriented, measurable, and sustainable in developing individual and organizational competences.
| S-EPMC8583010 | biostudies-literature
Project description:BackgroundThe success of big data initiatives depends on public support. Public involvement and engagement could be a way of establishing public support for big data research.ObjectiveThis review aims to synthesize the evidence on public involvement and engagement in big data research.MethodsThis scoping review mapped the current evidence on public involvement and engagement activities in big data research. We searched 5 electronic databases, followed by additional manual searches of Google Scholar and gray literature. In total, 2 public contributors were involved at all stages of the review.ResultsA total of 53 papers were included in the scoping review. The review showed the ways in which the public could be involved and engaged in big data research. The papers discussed a broad range of involvement activities, who could be involved or engaged, and the importance of the context in which public involvement and engagement occur. The findings show how public involvement, engagement, and consultation could be delivered in big data research. Furthermore, the review provides examples of potential outcomes that were produced by involving and engaging the public in big data research.ConclusionsThis review provides an overview of the current evidence on public involvement and engagement in big data research. While the evidence is mostly derived from discussion papers, it is still valuable in illustrating how public involvement and engagement in big data research can be implemented and what outcomes they may yield. Further research and evaluation of public involvement and engagement in big data research are needed to better understand how to effectively involve and engage the public in big data research.International registered report identifier (irrid)RR2-https://doi.org/10.1136/bmjopen-2021-050167.
| S-EPMC11364952 | biostudies-literature
Project description:Scientific excellence is a necessity for progress in biomedical research. As research becomes ever more international, establishing international collaborations will be key to advancing our scientific knowledge. Understanding the similarities in standards applied by different nations to animal research, and where the differences might lie, is crucial. Cultural differences and societal values will also contribute to these similarities and differences between countries and continents. Our overview is not comprehensive for all species, but rather focuses on non-human primate (NHP) research, involving New World marmosets and Old World macaques, conducted in countries where NHPs are involved in neuroimaging research. Here, an overview of the ethics and regulations is provided to help assess welfare standards amongst primate research institutions. A comparative examination of these standards was conducted to provide a basis for establishing a common set of standards for animal welfare. These criteria may serve to develop international guidelines, which can be managed by an International Animal Welfare and Use Committee (IAWUC). Internationally, scientists have a moral responsibility to ensure excellent care and welfare of their animals, which in turn, influences the quality of their research. When working with animal models, maintaining a high quality of care ("culture of care") and welfare is essential. The transparent promotion of this level of care and welfare, along with the results of the research and its impact, may reduce public concerns associated with animal experiments in neuroscience research.
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Project description:BackgroundThe Kenyan government has successfully been implementing sector specific and multisectoral projects aligned to the Global Health Security Agenda (GHSA). For operational readiness and to enhance the effective planning and implementation of Global Health Security Programs (GHSP) at national and subnational level, there is an urgent need for stakeholders' engagement process to seek input in identifying challenges, prioritise activities for field implementation, and identify applied research and development questions, that should be addressed in the next five years.MethodsThe modified Child Health and Nutrition Research Initiative (CHNRI) method was used to identify global health security related priorities for multisectoral implementation in Kenya. Subject matter experts from human, animal and environmental health sectors at national and subnational level contributed to predefined research questions from a number of sources and activities for consideration for implementation using a One Health approach. Sixty-two experts scored the 193 questions based on five pre-defined criteria: 1) feasibility and answerability; 2) potential for burden reduction; 3) potential for a paradigm shift; 4) potential for translation and implementation; and 5) impact on equity. Data resulting from this process was then analysed in a Microsoft Excel spreadsheet to determine the research priorities and experts' agreements.ResultsAmong the priority activities identified for implementation research were; strengthening One Health governance and legal frameworks; integration of ecosystem health into One Health programming; strengthening disease reporting, integrated data collection, information sharing and joint outbreak response; socio-anthropological and gender-based approaches in improving risk and behavioural change communication and community engagement; and one health workforce development. In addition, the potentials to invest in collaborative predictive risk modelling to enhance epidemic intelligence systems, while strengthening the One Health approach in the food safety incident and emergency response plans are feasible.InterpretationSuccessful multisectoral implementation of global health security program in Kenya calls for a whole of society approach that will harness community and private sector knowledge to build preparedness and response capacities while targeting neglected and marginalised populations. This research provides a framework that is worth emulating for cost-effective planning and implementation of overarching One Health programs.
| S-EPMC9754982 | biostudies-literature
Project description:AccessLabs are workshops with two simultaneous motivations, achieved through direct citizen-scientist pairings: (1) to decentralise research skills so that a broader range of people are able to access/use scientific research, and (2) to expose science researchers to the difficulties of using their research as an outsider, creating new open access advocates. Five trial AccessLabs have taken place for policy makers, media/journalists, marine sector participants, community groups, and artists. The act of pairing science academics with local community members helps build understanding and trust between groups at a time when this relationship appears to be under increasing threat from different political and economic currents in society. Here, we outline the workshop motivations, format, and evaluation, with the aim that others can build on the methods developed.
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