Public Engagement In Research Research Articles

Collaborative Research in Imperial Vienna: Science Organization, Statehood, and Civil Society, 1848–1914

Abstract This article deals with the goals, practices, and transformations of collaborative research that emerged between and within bureaucratic and bourgeois models of science organization in the late Habsburg monarchy. It offers novel insights into the political, social, and epistemic dimensions of public engagement in research, and evaluates the frameworks, profit expectations, and challenges involved. As will be exemplified by joint undertakings in the High Alps, the “Orient,” and the Adriatic Sea, private-public partnerships in the form of scientific societies or institutional alliances assumed vital functions. Their stakeholders volunteered for large-scale research projects, coordinated and funded infrastructure such as field stations, research vessels, or collecting expeditions, and became driving forces in establishing new forms of intra-imperial and cross-border collaboration. As such, scientific societies are useful indicators for understanding science-related developments and for illuminating the tensions between imperialism, (inter)national aspirations, and civil-society building. Based on sources from the archives of the k.k. Meteorological Society, the Natural Scientific Oriental Society, and the Adriatic Society, this article will analyze scientific collaboration as a purposeful and power-related interaction process, oriented toward mutual benefits, that took place on three levels: between state-owned research facilities and private societies, between bureaucrats and bourgeois, and between scientists and “non-professionals.”

From experimentation to structural change: fostering institutional entrepreneurship for public engagement in research and innovation

Abstract Many researchers experiment with participatory settings to increase public engagement in research and innovation (R&I). Because of their temporary nature, it often remains unclear how such participatory experiments can contribute to structural change. This paper empirically explores options for bridging this gap. It analyzes how participants can be supported to act as institutional entrepreneurs to actively promote public engagement in R&I. To draw lessons, we analyze empirical material gathered on nineteen Social Labs which were set up to promote the uptake of Responsible Research and Innovation in a European R&I funding program (Horizon 2020). Involvement of motivated participants, insight in their institutional context, and specific methods and management choices that enhance a sense of agency are identified as essential for organizing change. These findings and the resulting framework of interventions may prove valuable for further (action) research into the institutionalization of public engagement in R&I.

Series: Public engagement with research. Part 1: The fundamentals of public engagement with research

BackgroundIn the first of a four-part series, we describe the fundamentals of public engagement in primary care research.ObjectivesThe article’s purpose is to encourage, inform and improve the researcher’s awareness about public engagement in research. For a growing number of researchers, funders and patient organisations in Europe, public engagement is a moral and ethical imperative for conducting high-quality research.DiscussionStarting with an explanation of the role of public engagement in research, we highlight its diversity and benefits to research, researchers and the public members involved. We summarise principles of good practice and provide valuable resources for researchers to use in their public engagement activities. Finally, we discuss some of the issues encountered when researchers collaborate with members of the public and provide practical steps to address them. Case studies of real-life situations are used to illustrate and aid understanding.ConclusionWe hope this article and the other papers in this series will encourage researchers to better consider the role and practice of public engagement and the potential added value to research that collaborating with the public could provide.

Institutionalizing public engagement in research and innovation: Toward the construction of institutional entrepreneurial collectives

Abstract In the past decades we have seen increased policy discourse around public engagement with research and innovation. Despite this attention, the institutionalization of public engagement practices still appears rather limited, leading to a recent systemic turn in public engagement with science studies. Still missing in this systemic turn is a pragmatist and new institutionalist framework that can support research into how public engagement practices may enact or transform the research and innovation system. This article presents such a framework to help untangle how existing (in)formal institutions and materialities influence public engagement with research and innovation. To illustrate its utility, the framework is tentatively applied to engagement in the British research funding context. This application informs further development of the framework, including recommendations for (action) research into the construction of collectives of institutional entrepreneurs (institutional entrepreneurial collectives) that may support further institutionalization of public engagement in the research and innovation system.

What is Public Engagement and How Does it Help to Address Climate Change? A Review of Climate Communication Research

ABSTRACT This article examines the conceptualization of public engagement in research on climate communication. The review focuses on how public engagement is defined and how its relation to societal change and communication is thematized. In the majority of the reviewed work the term public engagement is used without being explicitly defined. Public engagement, communication, and societal change are approached predominantly from a psychological perspective that emphasizes personal engagement with climate change. The processes that connect what people personally think, feel, and do about climate change to the societal change required adequately to address the issue are rarely elaborated. Communication is predominantly approached as a pragmatic tool that can be used to address climate change rather than an object of theorization. The review concludes with a discussion of sociologically oriented research on climate communication.

Building community and public engagement in research – the experience of early career researchers in East Africa

Background: In this paper, we explain how three early career researchers actively engaged community members in health research in Kenya, Tanzania and Uganda in their research projects, and what was learnt from the experience. The research project in Kenya was on camel trypanosomiasis and the role of camel biting keds (or louse flies) in disease transmission. The project in Tanzania looked at the effect of human immunodeficiency virus (HIV) and antiretroviral therapy on fertility and ascertained the trends in the use of family planning services amongst women of reproductive age. The focus of the project in Uganda was the implementation of maternal death surveillance and the response policy to determine the cause of maternal deaths and how they might be prevented. Methods: In the three different settings, efforts to ensure local community engagement provided a focus for the researchers to hone their skills in explaining research concepts and working in partnership with community members to co-develop ideas, their research methods and outputs. Results: Involvement of communities in scientific research, which entailed a two-way mutual engagement process, led to (i) generation of new research ideas that shaped the work, (ii) strengthened mutual trust, and (iii) promoted uptake of research findings. Conclusions: Our key findings strongly support the need for considering community engagement as one of the key components in research studies.

Expect the unexpected? Challenges of prospectively exploring stakeholder engagement in research

Stakeholder engagement in research is increasingly viewed as making a major contribution to assisting impact. This paper draws on a longitudinal, prospective impact study exploring stakeholder engagement in a 3-year tobacco control research project which used stakeholder engagement in the development, testing and dissemination of its return on investment tool. The paper presents the challenges of data collection when undertaking prospective research on stakeholder engagement in health-related research. The impact study used mixed methods of data collection to explore stakeholder engagement in the target project, comprising surveys, interviews and observations of meetings and events involving stakeholders. Stakeholder engagement that actually occurred in the target project, and the data collection methods of stakeholder engagement that were actually used in the impact study, varied substantially from those intended in each case. Data collection for the impact study was dependent on the target project’s stakeholder engagement, which became substantially reduced. Modifications to data collection for the impact study were required. One of the reasons for the reduction of stakeholder engagement was linked to constraints on the target project to meet non-negotiable deadlines. Another factor was concerns about overburdening stakeholders. The knock-on effect of reduced stakeholder engagement highlighted the impact study’s lack of control over its data collection, which was related to the prospective nature of the study. The authors acknowledge that an advantage of a retrospective approach over a prospective one is researchers knowing about data availability and accessibility from the outset. However, the prospective approach of the impact study enabled insight into stakeholder engagement in real-time: how and when it occurred, the challenges, and the experiences of stakeholders and the target project researchers. While the quantity of data gathered was considerably less than anticipated, the quality of data was rich and enabled the impact study objectives to be achieved. With increasing emphasis on public engagement in research and calls for engagement to be evaluated for impact, this paper aims—by highlighting the challenges the impact study experienced—to provide some insight to future research that seeks to respond to those calls.

Developing a Canadian evaluation framework for patient and public engagement in research: study protocol

BackgroundPatient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement.ObjectiveThis project aims to build a national adaptable framework for the evaluation of PPE in research, by:Building consensus on common evaluation criteria and indicators for PPE in research;Defining recommendations to implement and adapt the framework to specific populations.MethodsUsing a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE.DiscussionThe potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.

A Journey of Hope: giving research participants a voice to share their experiences and improve community engagement around advanced HIV disease in Uganda

Over the last decade excellent progress has been made globally in HIV management thanks to antiretroviral therapy (ART) rollout and international guidelines now recommending immediate initiation of ART in all HIV-positive people. Despite this, advanced HIV disease (CD4 less than 200 cells/mL) and opportunistic infections remain a persistent challenge and contribute significantly to HIV-associated mortality, which equates to 23,000 deaths in Uganda in 2018 alone. Our Meningitis Research Team based in Uganda is committed to conducting clinical trials to answer important questions regarding diagnostics and management of HIV-associated opportunistic infections, including tuberculosis and cryptococcal meningitis. However, clinical research is impossible without research participants and results are meaningless unless they are translated into benefits for those affected by the disease. Therefore, we held a series of community engagement events with the aims of giving clinical research participants a voice in sharing their experiences of clinical research and messages of hope around advanced HIV disease with the community, dispelling myths and stigma around HIV, raising awareness about the complications of advanced HIV disease and local ongoing clinical research and recent scientific advances. The purpose of this Open Letter is to describe our community engagement experience in Uganda, which we hope will lay the foundation for further clinical research public engagement activities, giving research participants a greater voice to share their experiences.

Teaching Public Engagement in Research Using the Engagement Tool

The objective of this commentary is to provide educators with suggestions for courses that focus on publicly engaged research. We present an engagement tool that can be used to contrast traditional versus engaged approaches to research and help students understand the role of the researcher in public engagement and develop their position with respect to publicly engaged research.

Patient and public engagement in research and health system decision making: A systematic review of evaluation tools.

BackgroundPatient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published.ObjectiveSystematically review and appraise evaluation tools for patient and public engagement in research and health system decision making.MethodsWe searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject‐matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability.ResultsIn total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public.ConclusionA growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.

The dynamics of citizen sociolinguistics

The objective of this paper is to explore the dynamics of citizen science (CS) in sociolinguistics or citizen sociolinguistics, i.e. the engagement of non‐professionals in doing sociolinguistic research. Based on a CS‐study undertaken in Norway where we engaged young people as citizen scientists to explore linguistic diversity, this paper aims to clarify the definition of citizen sociolinguistics; it seeks to advance the discussion of the advantages of CS and of how CS can contribute to sociolinguistics; it also addresses the opposite: how sociolinguistics can contribute to the general field of citizen science; and it discusses the challenges of a CS‐methodology for sociolinguistic research, epistemologically and ethically, as well as in terms of recruitment, quality control and possible types of sociolinguistic tasks and topics. To meet the needs of society and societal challenges of today there is a need to develop methods and establish scientific acceptance for the relevance of public engagement in research. This paper argues that citizen sociolinguistics has the potential to advance the societal impact of sociolinguistics by constructing a dialogue between ‘the academy’ and ‘the citizens’; citizen sociolinguistics relies on and encourages participatory citizen agency, provides research experience, stimulates curiosity, further research, public understanding of science and (socio)linguistic awareness, and encourages linguistic stewardship.

Using theories of change to design monitoring and evaluation of community engagement in research: experiences from a research institute in Malawi

Background: Evaluation of community and public engagement in research is important to deepen understanding of how engagement works and to enhance its effectiveness. Theories of change have been recommended for evaluating community engagement, for their ability to make explicit intended outcomes and understandings of how engagement activities contribute to these outcomes. However, there are few documented examples of using theories of change for evaluation of engagement. This article reports experience of using theories of change to develop a framework for evaluating community engagement in research at a clinical research organisation in Malawi. We describe the steps used to develop theories of change, and the way theories of change were used to design data collection plans. Based on our experience, we reflect on the advantages and challenges of the theory of change approach. Methods: The theories of change and evaluation framework were developed through a series of workshops and meetings between engagement practitioners, monitoring and evaluation staff, and researchers. We first identified goals for engagement, then used 'so that' chains to clarify pathways and intermediate outcomes between engagement activities and goals. Further meetings were held to refine initial theories of change, identify priority information needs, and define feasible evaluation methods. Results: The theory of change approach had several benefits. In particular, it helped to construct an evaluation framework focused on relevant outcomes and not just activities. The process of reflecting on intended goals and pathways also helped staff to review the design of engagement activities. Challenges included practical considerations around time to consider evaluation plans among practitioners (a challenge for evaluation more generally regardless of method), and more fundamental difficulties related to identifying feasible and agreed outcomes. Conclusions: These experiences from Malawi provide lessons for other research organisations considering use of theories of change to support evaluation of community engagement.

How to refer to people with disease in research outputs: The disconnection between academic practise and that preferred by people with multiple sclerosis

BackgroundIncreasingly, Government and Charity funders require public engagement in research. Invariably these research outputs describe the condition of someone with the disease of interest. We therefore sought to identify the preferred descriptor of someone with a disease, such as multiple sclerosis (MS) and to determine what descriptors are currently used by academics. MethodsSeveral surveys were undertaken: one from the Research Network of the MS Society (MSSRN), a major MS Charity within the United Kingdom, who are involved in reviewing grant applications, priority setting and research governance (n=146), and surveys from both the United Kingdom MS register (MSR; n=1713) and the North American Research Committee on Multiple Sclerosis (NARCOMS) registry (n=518). People were asked to rate descriptors of someone affected with MS. These were compared to that used by academic experimenters in basic science and clinical science research papers. ResultsAlthough the frequency of responses varied between surveys the overall findings showed many consistencies. This included use of person/people with MS (pwMS) as the preferred descriptor for someone with MS for social media and scientific publications. This was the preferred choice in about 55–60% people from the MRS and in over 70% in the NARCOMS and the MSSRN, respectively. Although MSer was the second preferred–choice for use in social media, there was as a large range of preferences from the ‘most-preferred’ to the ‘most-disliked.’ This reflected an earlier survey by UK-based research blogs using the term MSer (n=173). In contrast, pwMS had few ‘dislikes’ and results were skewed towards the ‘liked’ and ‘most-preferred’ choices. Client and sufferer were generally disliked terms, although there was some regional variation in levels of choice. Patient was generally seen as a neutral term that was neither strongly liked nor disliked. However, patient gained more public support for use within scientific publications (~20–25%) compared to social media (~10–15%). This descriptor was however most commonly used (98–99%) within both pre-clinical (searched in 6-month output of preclinical autoimmune MS models; n=161) and in clinical publications (specialist MS journals; n=220), whereas pwMS was not reported in over 75% of papers published in some specialised MS journals, and did not appear in the pre-clinical animal studies examined. ConclusionThere is a clear disconnection between preferences by individuals living with MS and current academic practise. As pwMS are increasingly reading primary research publications and are involved in patient and public involvement in research and grant review activities, the sensitivities of lay readers should be considered when writing research outputs. This issue may affect other diseases and a change in writing style could be adopted to show that we respect the wishes of the people that we study and wish to help.

Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study.

BackgroundElectronic health records are widely acknowledged to provide an important opportunity to anonymize patient-level health care data and collate across populations to support research. Nonetheless, in the wake of public and policy concerns about security and inappropriate use of data, conventional approaches toward data governance may no longer be sufficient to respect and protect individual privacy. One proposed solution to improve transparency and public trust is known as Dynamic Consent, which uses information technology to facilitate a more explicit and accessible opportunity to opt out. In this case, patients can tailor preferences about whom they share their data with and can change their preferences reliably at any time. Furthermore, electronic systems provide opportunities for informing patients about data recipients and the results of research to which their data have contributed.ObjectiveTo explore patient perspectives on the use of anonymized health care data for research purposes. To evaluate patient perceptions of a Dynamic Consent model and electronic system to enable and implement ongoing communication and collaboration between patients and researchers.MethodsA total of 26 qualitative interviews and three focus groups were conducted that included a video presentation explaining the reuse of anonymized electronic patient records for research. Slides and tablet devices were used to introduce the Dynamic Consent system for discussion. A total of 35 patients with chronic rheumatic disease with varying levels of illness and social deprivation were recruited from a rheumatology outpatient clinic; 5 participants were recruited from a patient and public involvement health research network.ResultsPatients were supportive of sharing their anonymized electronic patient record for research, but noted a lack of transparency and awareness around the use of data, making it difficult to secure public trust. While there were general concerns about detrimental consequences of data falling into the wrong hands, such as insurance companies, 39 out of 40 (98%) participants generally considered that the altruistic benefits of sharing health care data outweighed the risks. Views were mostly positive about the use of an electronic interface to enable greater control over consent choices, although some patients were happy to share their data without further engagement. Participants were particularly enthusiastic about the system as a means of enabling feedback regarding data recipients and associated research results, noting that this would improve trust and public engagement in research. This underlines the importance of patient and public involvement and engagement throughout the research process, including the reuse of anonymized health care data for research. More than half of patients found the touch screen interface easy to use, although a significant minority, especially those with limited access to technology, expressed some trepidation and felt they may need support to use the system.ConclusionsPatients from a range of socioeconomic backgrounds viewed a digital system for Dynamic Consent positively, in particular, feedback about data recipients and research results. Implementation of a digital Dynamic Consent system would require careful interface design and would need to be located within a robust data infrastructure; it has the potential to improve trust and engagement in electronic medical record research.

How to write a good research grant proposal

This article aims to provide a step-by-step overview of the process of applying for research funding and will be most relevant to either a new academic joining a group or a young clinician wanting to establish their own research. The article covers the steps involved in preparing, writing and submitting an application. Included is a description of the different types of funding available, how to choose the right funding body, a discussion of the various people who should be involved in developing the research proposal (including the role of patient and public engagement in research) and the sources of support available to help the new researcher take their ideas forward. A checklist is provided to reiterate the key points.

Public Engagement in Energy Research

Public Engagement in Research is a key element in “Responsible Research and Innovation”; a cross-cutting issue in current European research funding. Public engagement can advance energy R&D, by delivering results that are more in-line with society’s views and demands; and collaboration also unlocks societal skills and knowledge. This paper structures the ways to look at engagement, and gives some pointers on how to implement it in energy R&D, with various levels of intensity. The publics to engage with can be citizens, future users, affected persons, but also organisations that represent them. We have selected methods and tools that showcase a broad range of types of engagement that have been applied in The Netherlands or the UK. The cases are grouped based on the role of the researcher in the engagement process. These roles relate to discussing with, consulting, involving, collaborating with and supporting the various publics. This study shows that there is a diversity of tools and methods already available—open to variation, combinations and further development- that facilitate the participation of society in energy research. Not only for democratic reasons, but also for instrumental benefits in creating innovations to help solve the Grand Societal Challenge of the energy transition.

Troubling the field of service user involvement in research

This paper sets out to interrogate two key issues in the field of service user or public engagement in research. These relate to privileging personal experience as a way of knowing and the forms of knowledge production that are assumed to take place in research partnerships. In both instances it is suggested that current orthodoxies may ‘close down’ opportunities for learning and understanding rather than democratising them. The final section of the paper suggests alternative ways of thinking about these aspects of service user involvement in research. These include ‘troubling’ identity claims and the forms of knowledge that tend to accompany them, a reconceptualisation of how they have come to be known in research partnerships and a reorientation towards the centrality of relations/hips in these research endeavours.

Evaluating services in partnership with older people: exploring the role of ‘community researchers’

This article is a collaboration between an academic researcher and four older people who worked together on the evaluation of a pilot project in Gloucestershire, with the aim of ‘making care homes part of our community’. Against a background of increasing public participation in research, we explore the role of ‘community researcher’ and the experiences of those involved. The article starts with an overview of policy and practice developments in relation to public engagement in research. A description is provided of a research project that included recruiting and training ‘community researchers’ to carry out an evaluation of the Partnerships for Older People Project in Gloucestershire. The next section focuses on the experiences of the older people who carried out this role, including some of the benefits and challenges that were encountered. The article concludes with a discussion of the implications for delivering meaningful public engagement in service development and evaluation.

Why Has Critique Run out of Steam? From Matters of Fact to Matters of Concern

Wars. Somanywars.Wars outside andwars inside.Culturalwars, science wars, and wars against terrorism.Wars against poverty andwars against the poor. Wars against ignorance and wars out of ignorance. My question is simple: Should we be at war, too, we, the scholars, the intellectuals? Is it really our duty to add fresh ruins to fields of ruins? Is it really the task of the humanities to add deconstruction to destruction? More iconoclasm to iconoclasm?What has become of the critical spirit? Has it run out of steam? Quite simply, my worry is that it might not be aiming at the right target. To remain in the metaphorical atmosphere of the time, military experts constantly revise their strategic doctrines, their contingency plans, the size, direction, and technology of their projectiles, their smart bombs, theirmissiles; I wonder why we, we alone, would be saved from those sorts of revisions. It does not seem to me that we have been as quick, in academia, to prepare ourselves for new threats, new dangers, new tasks, new targets. Are wenot like thosemechanical toys that endlesslymake the samegesturewhen everything else has changed around them? Would it not be rather terrible if we were still training young kids—yes, young recruits, young cadets—for wars that are no longer possible, fighting enemies long gone, conquering territories that no longer exist, leaving them ill-equipped in the face of threats we had not anticipated, for whichwe are so thoroughlyunprepared? Generals have always been accused of being on the ready one war late— especially French generals, especially these days. Would it be so surprising,