scholarly journals Patient and public engagement in decision-making regarding infectious disease outbreak management: an integrative review

2021 ◽  
Vol 6 (11) ◽  
pp. e007340
Author(s):  
Sophie Kemper ◽  
MEJ Bongers ◽  
ENE Slok ◽  
LJ Schoonmade ◽  
JFH Kupper ◽  
...  
Keyword(s):  
Infectious Disease ◽  
Decision Making ◽  
Public Engagement ◽  
Disease Outbreaks ◽  
Relevant Information ◽  
Control Measures ◽  
Structural Basis ◽  
Outbreak Management ◽  
The Public ◽  
Patient And Public Engagement

IntroductionWorldwide, people experience the effects of infectious disease outbreaks on a regular basis. These effects vary from direct impact of the virus on health, to indirect impact of control measures on day-to-day life. Yet, incorporating the experiences, views and ideas of patients and the public in decision-making in managing outbreaks does not take place on a structural basis. However, this might be beneficial. We examined the current incorporation of patient and public engagement (PPE) in decision-making regarding outbreak management (OM).MethodsA systematic search was executed in PubMed, Embase, APA PsycInfo, Web of Science, Scopus and other literature sources. Papers describing PPE in decision-making regarding OM on a collective level (group-level) were included. Relevant information about study characteristics, methods, impact and embedment of PPE in decision-making in OM was collected.ResultsThe search yielded 4186 papers of which 13 were included. The papers varied in study context and design. Remarkably, no substantial patient engagement was identified. Overall, public engagement (PE) in decision-making regarding OM was mostly executed by a mix of methods, for example, workshops, interviews and surveys. Knowledge and idea sharing between the public and experts was deemed beneficial for establishing well-informed discussions. The efforts resulted in either direct implications for practice or recommendations in policy papers. Most papers described their efforts as a first step. No structural embedment of collective PE in decision-making regarding OM was identified. Furthermore, the quality of most papers was low to moderate due to insufficient description.ConclusionOverall, various practices for PE can be potentially valuable, but structural embedment in OM decision-making on a collective level was low. Before PPE can be permanently embedded in OM, more evidence on its impact needs to be collected. Furthermore, reporting on the engagement process and used terminology needs to be harmonised to ensure reproducibility and transparency.

scholarly journals The More the Better? A Comparison of the Information Sources Used by the Public during Two Infectious Disease Outbreaks

PLoS ONE ◽  
2015 ◽  
Vol 10 (10) ◽  
pp. e0140028 ◽  
Author(s):  
Cynthia G. Jardine ◽  
Franziska U. Boerner ◽  
Amanda D. Boyd ◽  
S. Michelle Driedger
Keyword(s):  
Infectious Disease ◽  
Information Sources ◽  
Disease Outbreaks ◽  
The Public ◽  
Infectious Disease Outbreaks

scholarly journals Mental health services for infectious disease outbreaks including COVID-19: a rapid systematic review

2020 ◽  
Vol 50 (15) ◽  
pp. 2498-2513
Author(s):  
Jing-Li Yue ◽  
Wei Yan ◽  
Yan-Kun Sun ◽  
Kai Yuan ◽  
Si-Zhen Su ◽  
...  
Keyword(s):  
Mental Health ◽  
Infectious Disease ◽  
Disease Outbreaks ◽  
Mental Illnesses ◽  
Stepped Care ◽  
Research Database ◽  
The Public ◽  
Infectious Disease Outbreaks ◽  
Culturally Adapted ◽  
The Impact

AbstractThe upsurge in the number of people affected by the COVID-19 is likely to lead to increased rates of emotional trauma and mental illnesses. This article systematically reviewed the available data on the benefits of interventions to reduce adverse mental health sequelae of infectious disease outbreaks, and to offer guidance for mental health service responses to infectious disease pandemic. PubMed, Web of Science, Embase, PsycINFO, WHO Global Research Database on infectious disease, and the preprint server medRxiv were searched. Of 4278 reports identified, 32 were included in this review. Most articles of psychological interventions were implemented to address the impact of COVID-19 pandemic, followed by Ebola, SARS, and MERS for multiple vulnerable populations. Increasing mental health literacy of the public is vital to prevent the mental health crisis under the COVID-19 pandemic. Group-based cognitive behavioral therapy, psychological first aid, community-based psychosocial arts program, and other culturally adapted interventions were reported as being effective against the mental health impacts of COVID-19, Ebola, and SARS. Culturally-adapted, cost-effective, and accessible strategies integrated into the public health emergency response and established medical systems at the local and national levels are likely to be an effective option to enhance mental health response capacity for the current and for future infectious disease outbreaks. Tele-mental healthcare services were key central components of stepped care for both infectious disease outbreak management and routine support; however, the usefulness and limitations of remote health delivery should also be recognized.

OP82 Ethical Challenges Related To Engaging Patients And The Public In HTA

2018 ◽  
Vol 34 (S1) ◽  
pp. 30-30
Author(s):  
Meredith Vanstone ◽  
Julia Bidonde ◽  
Ken Bond ◽  
Julia Abelson ◽  
Lisa Schwartz ◽  
...  
Keyword(s):  
Public Engagement ◽  
Information Disclosure ◽  
Ethical Issues ◽  
Policy Decision ◽  
Health Technology ◽  
Ethical Challenges ◽  
Recruitment Methods ◽  
The Public ◽  
Risks And Benefits ◽  
Patient And Public Engagement

Introduction:It is widely recognized that the incorporation of patient and public perspectives can enrich health policy decision-making. Methodological and practical advice on engaging patients and the public has proliferated in recent years, with many health technology assessment (HTA) agencies working to formalize their processes in this area. However, despite growing enthusiasm for patient and public engagement, many ethical issues remain unaddressed including: balancing risks and benefits to participants; recruitment methods; reimbursement for time spent participating; representation; and, information disclosure.Methods:In this critical analysis, we draw on our collective experiences engaging with patients and public in the context of HTA. We use principles from two theories, i) research ethics, and ii) participatory governance, to analyze these challenges. The purpose of this analysis is to explore the ways in which risks and benefits to patient and public participants might be balanced in HTA activities.Results:We begin by describing some ethically challenging experiences we have faced when soliciting views and values from patients and members of the public, some anticipated and some unexpected. These challenges include unexpected disclosures of information, navigating power differentials when working with vulnerable populations, eliciting information about potentially traumatizing experiences, and fairly representing controversial and conflicting opinions. We offer examples about what types of patient engagement activities may subject participants to unreasonable risk, and suggest some guiding principles to help plan ethical patient and public engagement activities.Conclusions:Patient and public engagement requires more than just procedural methodological expertise- it also requires the ability to identify and analyze relevant ethical issues. We posit that health technology assessors have a moral obligation to ensure that the risks of patient and public engagement activities do not outweigh the benefits. We call upon the HTA community to engage in thoughtful deliberation about what can be learned from experiences within HTA and in other contexts.

Stakeholder Involvement in Outbreak Management

2019 ◽  
Vol 11 (2) ◽  
pp. 57-78
Author(s):  
Magdalena M. Kraaij-Dirkzwager ◽  
Lianne G. C. Schol ◽  
Tjerk Jan Schuitmaker-Warnaar ◽  
Aura Timen ◽  
Jim E. Van Steenbergen
Keyword(s):  
Time Pressure ◽  
Communicable Disease ◽  
Stakeholder Participation ◽  
Stakeholder Involvement ◽  
Disease Outbreaks ◽  
Network Governance ◽  
Control Measures ◽  
Outbreak Management ◽  
Collective Interest ◽  
Infectious Disease Outbreaks

Infectious diseases remain a threat to public health, requiring the coordinated action of many stakeholders. Little has been written about stakeholder participation and approaches to sharing information, in dynamic contexts and under time pressure as is the case for infectious disease outbreaks. Communicable-disease specialists fear that delays in implementing control measures may occur if stakeholders are not included in the outbreak-management process. Two case studies described in this article show how the needs of stakeholders may vary with time and that early sharing of information takes priority over shared decision-making. The stakeholders itemized their needs and potential contributions in order to arrive at the collective interest of outbreak management. For this, the results suggest the potential for improvement through development of “network governance” including the effective sharing of information in large networks with varying needs. Outbreaks in which conflicting perceptions may occur among the stakeholders require particular attention.

scholarly journals Harry’s Code. An interview with Harry Collins

2016 ◽  
Vol 1 (1) ◽  
pp. 25
Author(s):  
Robert Lorenzo Jomisko
Keyword(s):  
Decision Making ◽  
Public Engagement ◽  
Research Council ◽  
Knowledge Diffusion ◽  
Social Aspects ◽  
European Research ◽  
European Research Council ◽  
The Public ◽  
Slowing Down ◽  
Harry Collins

<span>While attending a conference in Budapest in May, I caught up with Harry Collins in Memento Park; an open-air museum filled several dozen statues, busts and plaques from the Communist era. According to the Hungarian architect Ákos Eleőd, who designed it, “the park is about dictatorship. And at the same time, because it can be talked about, described, built, this park is about democracy. After all, only democracy is able to give the opportunity to let us think freely about dictatorship.” In retrospect, it seemed a fitting location for the interview. As many of our readers are no doubt already aware, Collins has for at least ten years been engaged in discussions about social aspects of science and democracy. In efforts to impose what some have described as restrictions on public engagement with expertise, there are those who have labeled his proposals ‘illiberal’ and ‘undemocratic’. Others have viewed them as an attempt to ensure expertise is not lost when engaging the public in decision-making. Ever since his early works on knowledge diffusion in the 1970s, Collins has kept reinventing himself. And with an advanced grant from the European Research Council, he shows no signs of slowing down anytime soon.</span>

scholarly journals Public interest in immunity: justification for intervention in the early stages of COVID-19 (Preprint)

2020 ◽  
Author(s):  
Yunna Kwan ◽  
Jinhee Lee ◽  
Jun Young Lee ◽  
Keum Hwa Lee ◽  
Sung Hwi Hong ◽  
...  
Keyword(s):  
Infectious Disease ◽  
Public Interest ◽  
Early Stage ◽  
Relevant Information ◽  
Point Of View ◽  
Search Term ◽  
Strong Positive Correlation ◽  
The Public ◽  
The Uk ◽  
Google Search

UNSTRUCTURED Our study aimed to identify the interest and correlation between the proliferation of coronavirus disease 2019(COVID-19), interest in immunity and products that have been discussed to confer an enhancement of immunity, while suggesting the measures of intervention to be undertaken from a health and medical point of view. To assess the level of public interest in infectious disease during the initial days of the outbreak of COVID-19, we extracted Google search data from the past year based on the date of 15th of March 2020, which is approximately two months after the COVID-19 outbreak. In order to determine whether the public became interested in the immune system, we selected ‘coronavirus’, ‘immune’, ‘vitamin’ as our final search term. The increase in cumulative confirmed cases of coronavirus after January 20 had a strong positive correlation with search volumes for the terms ‘coronavirus’ (R = 0.786, P < .0001), ‘immune’ (R = 0.745, P < .0001) and ‘vitamin’ (R = 0.778, P < .0001), and the variables were all mutually statistically significant. Moreover, these correlations were confirmed on a country-basis when we restricted analyses to the US, the UK, Italy, and Korea. Our findings revealed that increases in search volumes for ‘coronavirus’ and ‘immune’ preceded the actual occurrences of confirmed cases. Our study implicates that during the initial phase of the COVID-19 crisis, the public’s desire and actions to strengthen their own immune systems were enhanced. Further, in the early stage of a pandemic there is a high potential of social media to inform the public about potentially helpful measures to prevent the spread of an infectious disease and provide relevant information about immunity and thereby increase the knowledge.

scholarly journals Investigating the role of public participation in wind energy project development in Ontario

2021 ◽  
Author(s):  
Anahita Asadolahniajami
Keyword(s):  
Decision Making ◽  
Renewable Energy ◽  
Public Participation ◽  
Wind Power ◽  
Public Engagement ◽  
Knowledge Broker ◽  
Decision Making Process ◽  
Project Development ◽  
The Public

the past several decades, the scope of decision-making in the public domain has changed from a focus on unilateral regulatory verdicts to a more comprehensive process that engages all stakeholders. Consequently, there has been a distinct increase in public participation in the environmental decision-making process. While the potential benefits of public engagement are substantial in terms of identifying synergies between public and industry stakeholders that encourage project development, this participation does not come without its challenges. To meet global energy demands and fulfill ambitious targets for greenhouse gas reduction, renewable energy has received increased attention as a feasible alternative to conventional sources of energy. However, current literature on renewable energy, particularly on wind power, highlights potential social barriers to renewable energy investment. This study investigates the role of public participation by reviewing two case studies of the Ontario wind power generation market to identify the facilitators and constrainers that affected public input into wind project development in Ontario and recommends a participatory framework in the hope of improving public engagement in the wind project development decision-making process. The recommended framework in this research requires all stakeholders to reconsider their current roles in the decision-making process. The public should engage in project planning and monitor the decision-making processes to ensure that their concerns have been addressed. Developers should address public concerns through a consensus building process initiated early in their planning process. Federal and provincial governments have to reclaim their role of ongoing leadership and provide better criteria for implementation and evaluation of the public participation processes. Finally, the process requires a third party who is not only an intermediary, but also plays the role of a knowledge-broker to connect with stakeholders, share and exchange knowledge, and work on overcoming barriers. The knowledge-broker helps to fulfill the main requirement of the collaborative decision-making, which is effective communication.

scholarly journals To what extent does evidence support decision making during infectious disease outbreaks? A scoping literature review

2020 ◽  
Vol 16 (3) ◽  
pp. 453-475 ◽  
Author(s):  
Andreea Salajan ◽  
Svetla Tsolova ◽  
Massimo Ciotti ◽  
Jonathan E. Suk
Keyword(s):  
Public Health ◽  
Infectious Disease ◽  
Decision Making ◽  
Disease Outbreaks ◽  
Decision Makers ◽  
Expert Advice ◽  
Scientific Uncertainty ◽  
Infectious Disease Outbreaks ◽  
Decision Making Processes

Background:Infectious disease outbreaks require decision makers to make rapid decisions under time pressure and situations of scientific uncertainty, and yet the role of evidence usage in these contexts is poorly understood. Aims and objectives:To define and contextualise the role of scientific evidence in the governance of infectious disease outbreaks and to identify recommendations for overcoming common barriers to evidence-informed decision making. Methods:A scoping review and an expert workshop to provide additional input into recommendations on enhancing evidence uptake during infectious disease outbreaks taking place in European settings. Findings:Forty-nine records reporting on multiple decision-making processes during infectious disease outbreaks of the past ten years were included in the study. Decision makers prioritise expert advice, epidemiological data and mathematical modelling data for risk characterisation and management, but tend to be challenged by scientific uncertainties, which allow for conflicting interpretations of evidence and for public criticism and contestation of decision-making processes. There are concrete opportunities for optimising evidence usage to improve public health policy and practice through investment in decision-making competencies, relationship building, and promoting transparent decision-making processes. Discussion and conclusions:It is not necessarily a disregard of evidence that puts a strain on decision making in health crises, but rather competing interests and the lack of clear, unambiguous and rapidly available evidence for risk characterisation and effectiveness of response measures.The relationship between science and public health decision making is relatively understudied but is deserving of greater attention, so as to ensure that the pursuit of evidence for decision making does not challenge timely and effective crisis management.

scholarly journals Perfect counterfactuals for epidemic simulations

2019 ◽  
Vol 374 (1776) ◽  
pp. 20180279 ◽  
Author(s):  
Joshua Kaminsky ◽  
Lindsay T. Keegan ◽  
C. Jessica E. Metcalf ◽  
Justin Lessler
Keyword(s):  
Infectious Disease ◽  
Disease Outbreaks ◽  
Computation Time ◽  
Control Measures ◽  
Mathematical Representation ◽  
Theme Issue ◽  
Stochastic Variation ◽  
Infectious Disease Outbreaks ◽  
Negative Effect ◽  
And Control

Simulation studies are often used to predict the expected impact of control measures in infectious disease outbreaks. Typically, two independent sets of simulations are conducted, one with the intervention, and one without, and epidemic sizes (or some related metric) are compared to estimate the effect of the intervention. Since it is possible that controlled epidemics are larger than uncontrolled ones if there is substantial stochastic variation between epidemics, uncertainty intervals from this approach can include a negative effect even for an effective intervention. To more precisely estimate the number of cases an intervention will prevent within a single epidemic, here we develop a ‘single-world’ approach to matching simulations of controlled epidemics to their exact uncontrolled counterfactual. Our method borrows concepts from percolation approaches, prunes out possible epidemic histories and creates potential epidemic graphs (i.e. a mathematical representation of all consistent epidemics) that can be ‘realized’ to create perfectly matched controlled and uncontrolled epidemics. We present an implementation of this method for a common class of compartmental models (e.g. SIR models), and its application in a simple SIR model. Results illustrate how, at the cost of some computation time, this method substantially narrows confidence intervals and avoids nonsensical inferences. This article is part of the theme issue ‘Modelling infectious disease outbreaks in humans, animals and plants: epidemic forecasting and control’. This theme issue is linked with the earlier issue ‘Modelling infectious disease outbreaks in humans, animals and plants: approaches and important themes’.

scholarly journals Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Leah K. Crockett ◽  
Carolyn Shimmin ◽  
Kristy D. M. Wittmeier ◽  
Kathryn M. Sibley
Keyword(s):  
Public Engagement ◽  
Health Research ◽  
Training Needs ◽  
Future Research ◽  
Advisory Group ◽  
Cross Sectional ◽  
The Public ◽  
Patient And Public Engagement ◽  
Manitoba Health ◽  
And Training

Abstract Background The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such requirements have charged health researchers with leading patient and public engagement efforts, but evidence suggests that this practice is still evolving. Little research has explored the experiences and training needs of health researchers. This study aimed to establish a baseline understanding of the experiences, perceptions and training needs of health researchers in engaging patients and the public in health research in the context of Manitoba. Methods A cross-sectional 50-item questionnaire was distributed using a multi-phase purposive sampling strategy targeting health researchers in Manitoba, Canada. Data was summarized using frequencies, percentages and analyzed using chi-square testing. A local patient engagement advisory group was consulted at the interpretation stage of the study to obtain feedback and input on the findings and their implications. Results Responses from 53 health researchers were included. Most participants had engaged patients and the public in their own research (n = 43, 81.1%). Those who had engaged reported having some (n = 19, 44.2%), extensive (n = 14, 32.6%) or a little (n = 10, 23.3%) experience with this process. Most engaged at the levels of inform, consult or involve (81.3, 64.6 and 54.2% respectively), while fewer engaged at the collaborate (37.5%) or patient-directed levels (12.5%). Recruitment occurred using a number of approaches and engagement occurred at various phases of the research process, while main groups engaged were patients (n = 38, 82.6%) and families/caregivers (n = 25, 54.4%). Barriers to engaging patients and the public in health research included funding, time, compensation, logistics, recruitment, motivation at both the patient and researcher level, and skills of researchers to engage. Researchers reported an overwhelming need and interest for supports, funding and training to effectively engage patients and the public in health research. Consultation with the patient advisory group provided further insight on study findings and areas for future research. Conclusions Participating Manitoba health researchers engaged patients and the public in health research at multiple, but typically lower levels of involvement. Findings highlight the barriers to effective, authentic and meaningful patient and public engagement and support the need for targeted training, supports, funding and time for health researchers.

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