Designing infographics in health research with patients and the public : A scoping review protocol

Publisher Copyright: Copyright: © 2023 Beecher et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.Peer reviewedPublisher PD

Series: Public engagement with research. Part 2:GPs and primary care researchers working inclusively with minoritised communities in health research to help address inequalities

Public engagement in health research is vital for addressing health disparities and promoting inclusivity among minoritised communities who often face barriers to accessing healthcare. Minoritised communities are groups, which have been made minorities by a dominant culture, race, ethnic group and/or social class and may experience health inequalities as a result. By incorporating diverse perspectives and lived experiences of minoritised communities, this approach aims to achieve contextually relevant research outcomes that reduce health inequalities and improve overall well-being. However, underrepresentation and lack of inclusivity challenges persist, necessitating the establishment of inclusive partnerships and grassroots participatory methodologies. To foster inclusive public engagement, it is important to overcome structural and cultural barriers, address socioeconomic challenges, and build trust with minoritised communities. This can be achieved by promoting a cultural shift that values inclusivity, providing comprehensive training to researchers, and collecting rigorous data on engagement demographics for transparency and accountability. Involving minoritised communities in decision-making through participatory research approaches enhances trust and yields successful outcomes. Additionally, allocating sufficient resources, collaborating in co-production, and prioritising the diverse needs and perspectives of stakeholders contribute to fostering inclusive public engagement in research. Overall, inclusive engagement practices particularly in primary care research have the potential to reduce health inequalities and cater to the unique requirements of minoritised communities, thereby creating more impactful outcomes and promoting equitable healthcare access

Designing infographics in health research with patients and the public: A scoping review protocol.

Information graphics or infographics combine visual representations of information or data with text. They have been used in health research to disseminate research findings, translate knowledge and address challenges in health communication to lay audiences. There is emerging evidence of the design of infographics with the involvement of patients and the public in health research. Approaches to involvement include public and patient involvement, patient engagement and participatory research approaches. To date, there has been no comprehensive review of the literature on the design of infographics with patients and the public in health research. This paper presents a protocol and methodological framework for a scoping review to identify and map the available evidence for the involvement of patients and the public in infographics design in health research. It has been informed by preliminary searches and discussions and will guide the conduct and reporting of this review

Successful Strategies to Engage Research Partners for Translating Evidence into Action in Community Health: A Critical Review

Objectives. To undertake a critical review describing key strategies supporting development of participatory research (PR) teams to engage partners for creation and translation of action-oriented knowledge. Methods. Sources are four leading PR practitioners identified via bibliometric analysis. Authors' publications were identified in January 1995-October 2009 in PubMed, Embase, ISI Web of Science and CAB databases, and books. Works were limited to those with a process description describing a research project and practitioners were first, second, third, or last author. Results. Adapting and applying the "Reliability Tested Guidelines for Assessing Participatory Research Projects" to retained records identified five key strategies: developing advisory committees of researchers and intended research users; developing research agreements; using formal and informal group facilitation techniques; hiring co-researchers/partners from community; and ensuring frequent communication. Other less frequently mentioned strategies were also identified. Conclusion. This review is the first time these guidelines were used to identify key strategies supporting PR projects. They proved effective at identifying and evaluating engagement strategies as reported by completed research projects. Adapting these guidelines identified gaps where the tool was unable to assess fundamental PR elements of power dynamics, equity of resources, and member turnover. Our resulting template serves as a new tool to measure partnerships

Sequential multiple assignment randomised trial to develop an adaptive mobile health intervention to increase physical activity in people poststroke in the community setting in Ireland: TAPAS trial protocol

INTRODUCTION: Stroke is the second-leading cause of death and disability globally. Participation in physical activity (PA) is a cornerstone of secondary prevention in stroke care. Given the heterogeneous nature of stroke, PA interventions that are adaptive to individual performance are recommended. Mobile health (mHealth) has been identified as a potential approach to supporting PA poststroke. To this end, we aim to use a Sequential Multiple Assignment Randomised Trial (SMART) design to develop an adaptive, user-informed mHealth intervention to improve PA poststroke. METHODS AND ANALYSIS: The components included in the 12-week intervention are based on empirical evidence and behavioural change theory and will include treatments to increase participation in Structured Exercise and Lifestyle or a combination of both. 117 participants will be randomly assigned to one of the two treatment components. At 6 weeks postinitial randomisation, participants will be classified as responders or non-responders based on participants' change in step count. Non-responders to the initial treatment will be randomly assigned to a different treatment allocation. The primary outcome will be PA (steps/day), feasibility and secondary clinical and cost outcomes will also be included. A SMART design will be used to evaluate the optimum adaptive PA intervention among community-dwelling, ambulatory people poststroke. ETHICS AND DISSEMINATION: Ethical approval has been granted by the Health Service Executive Mid-Western Ethics Committee (REC Ref: 026/2022). The findings will be submitted for publication and presented at relevant national and international academic conferences.</p

Assessing the outcomes of participatory research: protocol for identifying, selecting, appraising and synthesizing the literature for realist review

<p>Abstract</p> <p>Background</p> <p>Participatory Research (PR) entails the co-governance of research by academic researchers and end-users. End-users are those who are affected by issues under study (<it>e.g.</it>, community groups or populations affected by illness), or those positioned to act on the knowledge generated by research (<it>e.g.</it>, clinicians, community leaders, health managers, patients, and policy makers). Systematic reviews assessing the generalizable benefits of PR must address: the diversity of research topics, methods, and intervention designs that involve a PR approach; varying degrees of end-user involvement in research co-governance, both within and between projects; and the complexity of outcomes arising from long-term partnerships.</p> <p>Methods</p> <p>We addressed the above mentioned challenges by adapting realist review methodology to PR assessment, specifically by developing inductively-driven identification, selection, appraisal, and synthesis procedures. This approach allowed us to address the non-uniformity and complexity of the PR literature. Each stage of the review involved two independent reviewers and followed a reproducible, systematic coding and retention procedure. Retained studies were completed participatory health interventions, demonstrated high levels of participation by non-academic stakeholders (<it>i.e.</it>, excluding studies in which end-users were not involved in co-governing throughout the stages of research) and contained detailed descriptions of the participatory process and context. Retained sets are being mapped and analyzed using realist review methods.</p> <p>Results</p> <p>The librarian-guided search string yielded 7,167 citations. A total of 594 citations were retained after the identification process. Eighty-three papers remained after selection. Principle Investigators (PIs) were contacted to solicit all companion papers. Twenty-three sets of papers (23 PR studies), comprising 276 publications, passed appraisal and are being synthesized using realist review methods.</p> <p>Discussion</p> <p>The systematic and stage-based procedure addressed challenges to PR assessment and generated our robust understanding of complex and heterogeneous PR practices. To date, realist reviews have focussed on evaluations of relatively uniform interventions. In contrast our PR search yielded a wide diversity of partnerships and research topics. We therefore developed tools to achieve conceptual clarity on the PR field, as a beneficial precursor to our theoretically-driven synthesis using realist methods. Findings from the ongoing review will be provided in forthcoming publications.</p

Quantitative Methods in Participatory Research: Being Sensitive to Issues of Scientific Validity, Community Protection, and the Academic-Community Relationship

Background: From conducting a large systematic realist review of the Community-Based Participatory Research literature, we conceptualize participatory research (PR) as an approach to research through which stakeholders can implement quantitative, qualitative or mixed methods study designs. We will highlight the issues involved in co-constructing quantitative research such as randomized control trials in a community-based setting. Method and Results: The review team included experts in CBPR and realist review and was a collaboration between researchers and decision-making partners in public health, research funding, ethics review and community-engaged scholarship. 7167 abstracts were identified, 591 full-text papers selected and 83 sets of publications appraised. Of those, 23 CBPR health interventions were synthesized (comprising 276 publications). All twenty three partnerships from our review employed quantitative methods in their research designs involving observational and/or experimental designs and mixed methods research. To illustrate how partnerships used such methods and the issues which emerged, we draw on three partnerships as case studies. The examples presented here will demonstrate that commitment to dialogue and consensus building among partnership stakeholders is key to ensuring that methods do not generate scientifically valid research at the cost of community harm, loss of reputation, stigma or generating feelings of denial, betrayal and exclusion. Conclusion: PR can enhance the implementation of quantitative methods by ensuring that community interests are met at every step in the process. The partnered approach also provides the opportunity for community members to learn and recognize the benefits of conducting scientific research, while at the same time protecting community interests and the academic-community relationship. The outcome of ongoing dialogue between stakeholders on quantitative research methods can vary; however, coming to consensus, regardless of the outcome, through dedicated communication, patience, understanding, humility, and flexibility strengthens the trust bond in these partnerships, which facilitates future project and infrastructure developments

Examining the Unexpected and Unintended Outcomes of Community-Based Participatory Research

Background: Participatory research (PR) is the co-construction of research through partnerships between researchers and people affected by, and/or responsible for action on, the issues under study. Evaluating the benefits of PR is challenging for a number of reasons: the research topics and study designs are heterogeneous; the extent of collaborative involvement may vary from one project to the next; and partnership activities may generate a complex array of both short- and long-term outcomes. This complexity can manifest as unexpected and unintended outcomes which emerge spontaneously from the collaborative process, but are not well documented in the published literature Methods/Results: We identified, selected, and appraised a large-variety sample of primary studies describing PR partnerships. In each stage, two team members independently coded the literature. We used realist review methodology to synthesize the data, using the PR partnership as the main unit of analysis. From 7,167 abstracts and 591 full-text papers, we distilled for synthesis a final sample of twenty-three PR partnerships described in 276 publications. The link between the collaborative process and unintended/unexpected outcomes will be explained using the theory of partnership synergy. Partnership synergy theory suggests that the productive activity of a collaboration generates outcomes beyond that of which can be achieved by a single party working under similar conditions. Examples of unintended/unexpected outcomes will be described, involving new community infrastructure, systemic changes in community-level health service delivery, and spin-off projects that generate new health research and products. Conclusions: Unintended/unexpected outcomes of PR, while at risk of being overlooked in assessments, are nonetheless important to factor in when examining the outcomes of collaborative processes. This presentation will serve to illuminate this under-documented facet of the academic-community partnership

An integrative review protocol on interventions to improve users' ability to identify trustworthy online health information.

BackgroundThe epidemiological transition phenomena drive the attention to focus the scope on health literacy as it has an impact on patients' health outcomes and quality of life.AimThis paper aims to explore the implemented interventions for improving users' ability to identify trustworthy online health information.MethodologyA comprehensive search of the literature will be conducted on the following electronic bibliographic databases: Ovid Medline, Embase, Cochrane database, Academic search complete and APA psycinfo. Further, manual search of eligible studies reference lists will be carried out to identify other eligible studies. The search strategy will include a combination of three key blocks of terms, namely: (adult OR adults) Or (patient OR patients) OR (layperson OR laypersons) OR (caregiver OR caregivers), (Intervention OR Interventions) OR Educational programs OR (health literacy And curriculum) OR Community outreach OR Interactive workshops OR (Online portal OR Patient Portals), and information seeking behavior OR consumer health information OR online information OR social media OR access to information. The results of these categories will then be combined using the AND connector. Two independent reviewers will screen and assess data quality. Disagreements will be resolved by consensus. Due to the anticipated methodological pluralism of the potentially eligible studies, a narrative synthesis of the findings on interventions aimed at improving users' ability to identify trustworthy online information will be provided according to the pre-identified thematic areas. Furthermore, a narrative synthesis of the reported barriers and facilitators for applying these interventions by end users.Expected results and impactGiven that the focus of our review findings is on understanding the breadth and depth of the global research into interventions to improve users' ability to identify trustworthy online health information. The findings will be of great value to inform future innovative approaches to promote identification of trustable online sources for young people worldwide

Advancing social capital interventions from a network and population health perspective

Understanding the causal pathways linking social capital to health and health behaviors has been a key challenge within social epidemiological research over the past 15 years. Most studies on social capital have been cross sectional and observational, which has limited their capacity to identify causal pathways and draw conclusive inferences (Kawachi, Subramanian, and Kim, 2008; see Chap. 4). The relative shortage of published social capital and health intervention studies would seem to testify to the fact that social capital theory has yet to be successfully translated into intervention research. Besides lacking causal guarantees, there is also an identity crisis when it comes to social capital interventions. What is a social capital intervention? How would a social capital intervention differ from more familiar interventions seeking to improve such factors as social support or community capacity? Without a clear identity, the concept of a social capital intervention risks being essentially all things to all people. This chapter seeks to address the identity crisis facing research and practice on social capital interventions. The chapter takes a network approach to social capital to advance a defi nition of social capital interventions and a set of guiding principles for developing social capital interventions