Case Study With a Participatory Approach: Rethinking Pragmatics of Stakeholder Engagement for Implementation Research
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SUBMITTER: Hudon C
PROVIDER: S-EPMC8575520 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Introduction/objectivesThe engagement of patients and other stakeholders is a critical element in the design of patient-centered outcomes research studies. However, methodology for scalable engagement in research management particularly activities such as operationalization of principles and setting of priorities is not well-developed. The objective of this study is to describe a novel approach for scalable stakeholder engagement in research aligned with the Patient-Centered Outcomes Research Institute (PCORI) engagement principles, which was evaluated in a national clinical data research network.Materials and methodsPatient, patient advocate, clinician, and researcher stakeholders were recruited from clinical sites, as well as social media sites related to the 3 conditions of focus, heart failure, obesity, and Kawasaki disease. The engagement strategy was designed, implemented, and mapped to the PCORI engagement principles. Evaluation included internal assessment and quantitative measures of online engagement.ResultsWe operationalized the PCORI principles with 12 stakeholder engagement strategies and convened stakeholder advisory boards and online research prioritization panels to determine research priorities in a rigorous, deliberative process. A total of 46 advisors (20 patients) and 339 panelists (159 patients) actively participated. There were not significant differences between patients and clinicians in level of online engagement. Nonetheless, while patients reported a slightly greater challenge with following online discussion, they overall had a more favorable opinion about use of the online format.Discussion/conclusionAn efficient way to engage large numbers of representative stakeholders in research is a necessary first step to assure the public of trustworthy use of data networks for health research. This paper describes a comprehensive approach to engagement in patient-centered outcomes research management that informs ongoing development of rigorous methodologies in this area.
| S-EPMC6143220 | biostudies-literature
Project description:The health and education departments of government share a responsibility for promoting the health of children through policies in the school setting. These policies can be enhanced through the involvement of such stakeholders as school personnel, students, parents or caregivers, health professionals, the non-profit sector and industry. Although there is little evidence-based literature on the roles of stakeholders in school policy development and implementation, stakeholder involvement appears to be critical throughout the policy process. This article discusses stakeholder involvement in the development and implementation of school policies that promote and support healthy eating and physical activity. Canadian examples illustrate stakeholder engagement in this context.Electronic Supplementary MaterialSupplementary material is available for this article at 10.1007/BF03405621 and is accessible for authorized users.
| S-EPMC6973626 | biostudies-literature
Project description:INTRODUCTION:Stakeholder engagement can play an important role in increasing public trust and the understanding of scientific research and its impact. Frameworks for stakeholder identification exist, but these frameworks may not apply well to basic science and early stage translational research. METHODS:Four Clinical and Translational Science Award (CTSA) hubs led six focus groups and two semi-structured interviews using a semi-structured discussion guide to learn from basic science researchers about stakeholder engagement in their work. The 24 participants represented fourteen clinical and academic disciplines. RESULTS:Early stage translational researchers reported engagement with a broad array of stakeholders. Those whose research has a clinical focus reported working with a more diverse range of stakeholders than those whose work did not. Common barriers to stakeholder engagement were grouped into three major themes: a poor definition of concepts, absence of guidance, and limited resources. DISCUSSION:The National Center for Advancing Translational Sciences (NCATS), the consortium of CTSAs, and the individual CTSA "hubs" are three actors that can help early stage translational researchers develop shared terms of reference, build the necessary skills, and assemble the appropriate resources for engaging stakeholders in Clinical and Translational Research. Getting this right will involve a coordinated push by all three entities.
| S-EPMC7332000 | biostudies-literature
Project description:Approaches for optimizing medication use and enhancing medication experiences, including deprescribing, for older people living in long-term care homes are urgently needed. Through a multiphase initiative involving an environmental scan (2018) and two stakeholder forums (2019, 2020), we created a framework for developing and implementing sustainable deprescribing practices in this sector. Representatives from public advocacy, health care professionals, long-term care, pharmacy service providers, and regional health and public policy organizations in Ontario, Canada were consulted. We used behavioural science and implementation planning strategies to develop four target behaviours and 14 supporting actions; five of these actions were prioritized for further work. Throughout the phases, stakeholders committed to participation at various levels including ongoing implementation teams working to develop resources for the prioritized actions. A key element of success was attracting and sustaining engagement of a wide variety of relevant stakeholders from across the health system by leveraging best practices in stakeholder engagement. The approach used is described in detail so that it can be adapted and applied by others to plan large behaviour change initiatives.
| S-EPMC9420956 | biostudies-literature
Project description:BackgroundBecause no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes (as a patient or member of the public). Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others (the many 'publics' of engagement) brings them closer to the research but also brings the research closer to them. When translating research into practice, engaging the public and other stakeholders is explicitly intended to make the outcomes of translation relevant to its constituency of users.MethodsIn practice, engagement faces numerous challenges and is often time-consuming, expensive and 'thorny' work. We explore the epistemic and ontological considerations and implications of four common critiques of engagement methodologies that contest: representativeness, communication and articulation, impacts and outcome, and democracy. The ECOUTER (Employing COnceptUal schema for policy and Translation Engagement in Research) methodology addresses problems of representation and epistemic foundationalism using a methodology that asks, "How could it be otherwise?" ECOUTER affords the possibility of engagement where spatial and temporal constraints are present, relying on saturation as a method of 'keeping open' the possible considerations that might emerge and including reflexive use of qualitative analytic methods.ResultsThis paper describes the ECOUTER process, focusing on one worked example and detailing lessons learned from four other pilots. ECOUTER uses mind-mapping techniques to 'open up' engagement, iteratively and organically. ECOUTER aims to balance the breadth, accessibility and user-determination of the scope of engagement. An ECOUTER exercise comprises four stages: (1) engagement and knowledge exchange; (2) analysis of mindmap contributions; (3) development of a conceptual schema (i.e. a map of concepts and their relationship); and (4) feedback, refinement and development of recommendations.ConclusionECOUTER refuses fixed truths but also refuses a fixed nature. Its promise lies in its flexibility, adaptability and openness. ECOUTER will be formed and re-formed by the needs and creativity of those who use it.
| S-EPMC5379503 | biostudies-literature
Project description:Many Small Island Developing States of the Caribbean experience a triple burden of malnutrition with high rates of obesity, undernutrition in children, and iron deficiency anemia in women of reproductive age, driven by an inadequate, unhealthy diet. This study aimed to map the complex dynamic systems driving unhealthy eating and to identify potential points for intervention in three dissimilar countries. Stakeholders from across the food system in Jamaica (n = 16), St. Kitts and Nevis (n = 19), and St. Vincent and the Grenadines (n = 6) engaged with researchers in two group model building (GMB) workshops in 2018. Participants described and mapped the system driving unhealthy eating, identified points of intervention, and created a prioritized list of intervention strategies. Stakeholders were also interviewed before and after the workshops to provide their perspectives on the utility of this approach. Stakeholders described similar underlying systems driving unhealthy eating across the three countries, with a series of dominant feedback loops identified at multiple levels. Participants emphasized the importance of the relative availability and price of unhealthy foods, shifting cultural norms on eating, and aggressive advertising from the food industry as dominant drivers. They saw opportunities for governments to better regulate advertising, disincentivize unhealthy food options, and bolster the local agricultural sector to promote food sovereignty. They also identified the need for better coordinated policy making across multiple sectors at national and regional levels to deliver more integrated approaches to improving nutrition. GMB proved to be an effective tool for engaging a highly diverse group of stakeholders in better collective understanding of a complex problem and potential interventions.
| S-EPMC7071222 | biostudies-literature
Project description:Breast cancer (BC) has overtaken lung cancer as the most common cancer in the world and the projected incidence rates show a further increase. Early detection through population screening remains the cornerstone of BC control, but a progressive change from early diagnosis only-based to a personalized preventive and risk-reducing approach is widely debated. Risk-stratification models, which also include personal lifestyle risk factors, are under evaluation, although the documentation burden to gather population-based data is relevant and traditional data collection methods show some limitations. This paper provides the preliminary results from the analysis of clinical data provided by radiologists and lifestyle data collected using self-administered questionnaires from 5601 post-menopausal women. The weight of the combinations of women's personal features and lifestyle habits on the BC risk were estimated by combining a model-driven and a data-driven approach to analysis. The weight of each factor on cancer occurrence was assessed using a logistic model. Additionally, communities of women sharing common features were identified and combined in risk profiles using social network analysis techniques. Our results suggest that preventive programs focused on increasing physical activity should be widely promoted, in particular among the oldest women. Additionally, current findings suggest that pregnancy, breast-feeding, salt limitation, and oral contraception use could have different effects on cancer risk, based on the overall woman's risk profile. To overcome the limitations of our data, this work also introduces a mobile health tool, the Dress-PINK, designed to collect real patients' data in an innovative way for improving women's response rate, data accuracy, and completeness as well as the timeliness of data availability. Finally, the tool provides tailored prevention messages to promote critical consciousness, critical thinking, and increased health literacy among the general population.
| S-EPMC9736257 | biostudies-literature
Project description:Participatory research approaches have developed in response to the growing emphasis on translation of research evidence into practice. However, there are few published examples of stakeholder engagement strategies, and little guidance specific to larger ongoing research programs or those with a rural focus. This paper describes the evolution, structure, and processes of an annual Rural Dementia Summit launched in 2008 as an engagement strategy for the Rural Dementia Action Research (RaDAR) program and ongoing for more than 10 years; and reports findings from a parallel mixed-methods study that includes stakeholder and researcher perspectives on the Summit's value and impact. Twelve years of stakeholder evaluations were analyzed. Rating scale data were summarized with descriptive statistics; open-ended questions were analyzed using an inductive thematic analysis. A thematic analysis was also used to analyze interviews with RaDAR researchers. Rating scale data showed high stakeholder satisfaction with all aspects of the Summit. Five themes were identified in the qualitative data: hearing diverse perspectives, building connections, collaborating for change, developing research and practice capacity, and leaving recharged. Five themes were identified in the researcher data: impact on development as a researcher, understanding stakeholder needs, informing research design, deepening commitment to rural dementia research, and building a culture of engagement. These findings reflect the key principles and impacts of stakeholder engagement reported in the literature. Additional findings include the value stakeholders place on connecting with stakeholders from diverse backgrounds, how the Summit was revitalizing, and how it developed stakeholder capacity to support change in their communities. Findings indicate that the Summit has developed into a community of practice where people with a common interest come together to learn and collaborate to improve rural dementia care. The Summit's success and sustainability are linked to RaDAR's responsiveness to stakeholder needs, the trust that has been established, and the value that stakeholders and researchers find in their participation.
| S-EPMC9499231 | biostudies-literature
Project description:BackgroundMusculoskeletal (MSK) pain is a global public health problem with increased societal burden. Increased attention has focused toward patient and other stakeholder perspectives when determining future MSK pain research priorities, however infrastructure and capacity building within the community are needed for individuals and organizations to participate in patient-centered outcomes research. The purpose of this manuscript is to describe our collaborative experiences with several MSK pain stakeholders and processes to identify a top priority research topic.MethodsLunch meetings and formalized workshops were used to develop infrastructure for engaging patients and other stakeholders with early capacity building for partners to identify MSK pain research ideas based on their personal experiences. Additional capacity building and engagement through literature searching further prepared partners to contribute informed decisions about MSK pain research topics and subsequent selection of an important research question.ResultsSeveral key deliverables (e.g., Governance Document, Communication Plan) were developed and completed over the course of this project to provide partnership structure. Other key deliverables included a list of preliminary comparative effectiveness research ideas (n?=?8) and selection of shared decision making for MSK pain as the top priority research topic with patient partners identifying pain self-efficacy as an important outcome domain.ConclusionsOur patient partners provided the catalyst for identifying shared decision making as a high priority research topic based on a wide spectrum of stakeholder perspectives and unique experiences. Patient partners were primarily identified using a single rehabilitation health system and clinician partners were heavily weighted by physical therapists which may have introduced selection bias.
| S-EPMC7268422 | biostudies-literature
Project description:BackgroundThe inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research has been identified as a national priority, though evaluation of engagement strategies and their impact has been limited. In dementia care research, stakeholders can include individuals living with dementia, family care partners, and health and social care professionals in dementia care. A Stakeholder Advisory Council (SAC) was established to identify priorities for dementia care research that are most important to stakeholders. Strategies to build capacity for research and facilitate engagement among the SAC were used to identify the research priorities. This study describes the experiences of SAC members engaged in the research process.MethodsTo evaluate stakeholder engagement, semi-structured interviews were conducted with members of the SAC to understand their experiences and perspectives on the strategies used to facilitate engagement and build capacity for research. Interviews were recorded, transcribed, and thematically analyzed using a mixed inductive and deductive approach. Findings were presented to members of the SAC to determine whether they felt their perspectives and experiences were accurately represented. Final domains and themes presented here were approved by the SAC.ResultsInterviews (N = 11) were conducted with members of the SAC representing each stakeholder group; persons living with dementia (n = 2); family care partners (n = 4), and health and social care professionals in dementia care (n = 5). Ten themes were categorized into four overarching domains: accessibility, council infrastructure, values and environment, and benefits of involvement.ConclusionsFindings from this qualitative study are a resource for researchers seeking to collaborate with diverse stakeholder groups to represent their perspectives in research, including individuals living with dementia. The domains and themes identified here support the inclusion of diverse stakeholders in the research process, centering engagement and capacity building strategies around individuals living with dementia.
| S-EPMC8300992 | biostudies-literature