Yes / Public and patient involvement (PPI) has been shown to have a positive impact on health and social care research. However, adequate examples describing how to operationalise effective PPI, especially in doctoral studies, are lacking. Hence, doctoral researchers new to research, or those with limited experience, can be discouraged from facilitating PPI in their research. This paper aims to describe and discuss in detail the approaches used by four doctoral researchers to incorporate PPI at different stages of their research studies from study design to disseminating findings. We aim to inform other doctoral researchers about the challenges and limitations relating to PPI that we faced. Through these, we share pragmatic recommendations for facilitating PPI during doctoral studies. The description of four case studies demonstrated that PPI could be incorporated at various stages during doctoral research. This has had a beneficial impact on our research study progression, researcher self-esteem and lastly, helped alleviate researcher isolation during doctoral studies. / Supported by Research Design Service Yorkshire and the Humber (RDSYH), the National Institute for Health Research (NIHR) Yorkshire and Humber Patient Safety Translational Research Centre (NIHR Yorkshire and Humber PSTRC). This paper presents independent research funded by NIHR under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0317-20010). / Research Development Fund Publication Prize Award winner, July 2019.

Title from PDF of title page. / Document formatted into pages; contains 323 pages. / Thesis (Ph.D.)--University of South Florida, 2002. / Includes bibliographical references. / Text (Electronic thesis) in PDF format. / ABSTRACT: This dissertation reports the activities, methods, and key findings of a doctoral research project in applied anthropology and an environmental anthropology fellowship. The research project was conducted through the Department of Anthropology at the University of Michigan, while the fellowship was sponsored jointly by the Society for Applied Anthropology and the United States Environmental Protection Agency and was conducted through the Great Lakes Fellowship Program of the Great Lakes Commission, in Ann Arbor, Michigan. Together, these projects demonstrated the utility of an ethnographic approach called Risk Perception Mapping (RPM) to the public consultation and social research interests of the Commission and its associated network of environmental management agencies and organizations. / Through consultation with these organizations I identified an environmental management problem to which anthropological perspectives and methods would be particularly well-suited: Can the undesirable social phenomenon of environmental discrimination be minimized by assuring greater equality in access to public participation in environmental management? To address this problem, I conducted an RPM demonstration project in a five county area surrounding the Fermi II nuclear power plant in southeastern Michigan. My research focused on cultural, geographical, and social-contextual factors that influence the nature and distribution of perceived risk among populations that are potentially affected by environmental management projects. Key findings pertain to perceptually-specific communities of environmental risk and have implications for what I call "participatory equity" in environmental management. / Potential applications to Great Lakes environmental management center on developing equitable population-specific exchanges of information through which more culturally sensitive indicators of Great Lakes ecosystem integrity may emerge. Anthropological contributions to public participation in environmental management are discussed with particular attention to anthropological perspectives on the multiple publics that comprise locally affected communities of environmental risk. / System requirements: World Wide Web browser and PDF reader. / Mode of access: World Wide Web.

This dissertation reports the activities, methods, and key findings of a doctoral research project in applied anthropology and an environmental anthropology fellowship. The research project was conducted through the Department of Anthropology at the University of Michigan, while the fellowship was sponsored jointly by the Society for Applied Anthropology and the United States Environmental Protection Agency and was conducted through the Great Lakes Fellowship Program of the Great Lakes Commission, in Ann Arbor, Michigan. Together, these projects demonstrated the utility of an ethnographic approach called Risk Perception Mapping (RPM) to the public consultation and social research interests of the Commission and its associated network of environmental management agencies and organizations. Through consultation with these organizations I identified an environmental management problem to which anthropological perspectives and methods would be particularly well-suited: Can the undesirable social phenomenon of environmental discrimination be minimized by assuring greater equality in access to public participation in environmental management? To address this problem, I conducted an RPM demonstration project in a five county area surrounding the Fermi II nuclear power plant in southeastern Michigan. My research focused on cultural, geographical, and social-contextual factors that influence the nature and distribution of perceived risk among populations that are potentially affected by environmental management projects. Key findings pertain to perceptually-specific communities of environmental risk and have implications for what I call "participatory equity" in environmental management. Potential applications to Great Lakes environmental management center on developing equitable population-specific exchanges of information through which more culturally sensitive indicators of Great Lakes ecosystem integrity may emerge. Anthropological contributions to public participation in environmental management are discussed with particular attention to anthropological perspectives on the multiple publics that comprise locally affected communities of environmental risk.

State planning and transportation agencies continually face the escalating problem of increasing needs coupled with limited financial resources to meet those needs. In this difficult fiscal environment, the importance of meaningfully involving the public in the decisions that shape the future of our cities and regions becomes even more amplified. Proactively working with the public to gain buy-in from the early stages of the planning process is one of the most effective strategies to reduce project costs. The classic process in which state planning and transportation agencies have engaged the public is no longer an effective or efficient model as public meeting attendance has consistently decreased. As technology continues to shape the way that the public communicates with each other and their government, the onus falls on state planning and transportation agencies not only to continue to provide the traditional methods of engagement, but to look for new and innovative ways to gain increased public participation in the planning process. The traditional methods of public engagement will always be an important part of the planning process, but discovering the effectiveness of emerging technologies in order to develop new best practices for public engagement is the charge of the future. This report will evaluate whether a) online participatory planning spaces expand participation in the planning process and b) examine how evaluative metrics gathered by using online tools can inform decision makers of the utility of virtual planning spaces. This report will then present an evaluative criteria in order to establish a baseline by which to assess the performance of public involvement processes. This report will then present a case study of the Oak Hill Parkway Virtual Open House Pilot Project, a pilot study conducted in Austin, Texas to test the effectiveness of online participatory planning spaces in the field. This report will also share the results of interviews with Oak Hill Parkway Project representatives regarding the usefulness of virtual planning spaces. The report will conclude with a discussion of lessons learned and future research needs. / text

Mémoire numérisé par la Division de la gestion de documents et des archives de l'Université de Montréal.

Mémoire numérisé par la Division de la gestion de documents et des archives de l'Université de Montréal

Background: There is a great need for effective treatments for mental health problems. Randomised controlled trials are the gold standard for evaluating treatments, however recruitment into trials is challenging, highlighting a clear need for evidence-based recruitment strategies. This thesis aimed to systematically develop a recruitment intervention and evaluate its effectiveness for improving the recruitment of participants into mental health trials. Methods: A mixed-methods approach, adopting the Medical Research Council’s complex interventions framework: 1) a systematic review to identify the evidence base and describe the factors affecting recruitment into depression trials; 2) a qualitative study to understand patients’ decision-making process in declining to enrol in a depression trial; 3) development of a recruitment intervention, using Participatory Design methods; and 4) evaluation of the recruitment intervention, using a randomised controlled trial, embedded in an ongoing mental health trial (the EQUIP trial). The primary outcome was the proportion of participants enrolled in EQUIP. Results: From the systematic review, a conceptual framework of factors influencing the decision to participate was developed, which highlighted that the decision to enrol involves a judgement between risk and reward. Findings suggested that patient and public involvement in research (PPIR) might be advertised to potential participants to reduce such perceived risk. The qualitative study found positive views of trials. Interviewees’ decision making resembled a four-stage process; in each stage they either decided to decline or progressed to the next stage. In Stage 1, those with an established position of declining trials opted out – they are termed ‘prior decliners’. In Stage 2, those who opted out after judging themselves ineligible are termed ‘self-excluders’. In Stage 3, those who decided they did not need the trial therapy and opted out are termed ‘treatment decliners’. In Stage 4, those who opted out after judging that disadvantages outweighed advantages are termed ‘trial decliners’. While ‘prior decliners’ are unlikely to respond to trial recruitment initiatives, the factors leading others to decline are amenable to amelioration as they do not arise from a rejection of trials. We recruited a host mental health trial (EQUIP), and worked with key stakeholders, including mental health service users and carers, to develop an intervention using a leaflet to advertise the nature and function of the PPIR in EQUIP to potential trial participants. 34 community mental health teams were randomised and 8182 patients invited. For the primary outcome, 4% of patients in the PPIR group were enrolled versus 5.3% of the control group. The intervention was not effective for improving recruitment rates (adjusted OR= 0.75, 95% CI= 0.53 to 1.07, p=0.113). Conclusions: This thesis reports the largest ever trial to evaluate the impact of a recruitment intervention. It also reports the largest trial of a PPIR intervention and makes a contribution to the evidence base on trial recruitment as well as to that assessing the impact of PPIR. Two further embedded trials are underway to evaluate the effectiveness of different versions of the recruitment intervention in different trial contexts and patient populations. This will also allow the results to be pooled to generate a more precise estimate of effect; to evaluate the impact of the intervention on trial retention; and to explore patient experiences of receiving the intervention.

Le pouvoir de décision unilatérale de l’administration entretient avec la démocratie administrative des rapports ambivalents. Appréhendée comme l’ensemble des règles qui tendent à la participation des administrés à l’élaboration des décisions administratives, la démocratie administrative est de prime abord contradictoire avec la dimension de contrainte et de commandement que l’unilatéralité manifeste. Faisant figure d’oxymore, elle s’est pourtant imposée à un pouvoir dont la légitimité semblait remise en cause. Le principe d’une participation des administrés irrigue désormais, à travers des procédés multiples et utilisant les nouvelles technologies, la relation entre le « public » et l’administration : la démocratie administrative a saisi le pouvoir de décision unilatérale.Pourtant, loin de remettre en cause ce pouvoir, la démocratie administrative vient en réalité le conforter. En se limitant à une ouverture du processus d’élaboration de certaines décisions administratives, le droit actuel de la participation des administrés n’atteint pas les caractères mêmes de l’unilatéralité. Les participants n’accèdent que très exceptionnellement au rang de coauteurs et leur influence sur le contenu de la décision est limitée. La sollicitation du public s’avère être un instrument de légitimation du volontarisme de la puissance publique. Avec le renfort du juge administratif, la participation des administrés demeure un simple moment procédural. La démocratie administrative se révèle être en définitive une notion malléable, dont l’administration tire profit dans l’exercice de son pouvoir de décision unilatérale. / The unilateral decision-making power of the administration maintains an ambivalent relationship with the administrative democracy. Understood as the set of rules which tend to the governed participation in the development of administrative decisions, administrative democracy is prima facie contradictory to the dimensions of constraint and command that are part of unilaterality. Standing as an oxymoron, it has yet imposed on a power which legitimacy seemed compromised. The principle of participation of the governed irrigates now, across multiple processes and through the use of new technologies, the relationship between the "public" and the administration: the administrative democracy has seized the power of unilateral decision.Yet far from questioning this power, the administrative democracy has actually strengthened it. Limiting itself to opening up the process of drafting of certain administrative decisions, the current right of participation of the governed does not reach the characters of unilateralism. Participants only access exceptionally to the rank of co-authors and their influence on the content of the decision remains limited. Public solicitation proves to be a legitimizing instrument of the voluntarism of the public authority. With the reinforcement of the administrative judge, citizen’s participation remains a simple procedural time. The administrative democracy ultimately proves to be a malleable concept, of which the administration benefits in exercising its power of unilateral decision.

The construction industry has an increased focus on using sustainable methods to reach a more sustainable society but is still lacking the social aspect of sustainability. The belief is that this aspect has to be a natural part in construction projects to successfully plan and develop sustainable societies. A method to achieve this could be the use of Social Impact Assessment (SIA), a method frequently used in other countries such as U.S, Australia and Canada. The aim with the thesis is to investigate how this method can be used in a Swedish context, but also how the public in the best manner can be involved in decisions that affect them. To complement the theory with empirical findings a case study is done within Järvalyftet, one of the biggest redevelopment projects in the Stockholm region at the moment. A SIA deals with several areas and issues and is therefore complex to perform in an efficient way. It is consequently important to create a team with mixed disciplines to be able to manage the work and face the different problems in the best possible way. The thesis indicates that public involvement is of major importance to create an acceptance for the planned project among the affected parties in order to reduce both the timeframe and the costs of the project. Further, the thesis indicates that public involvement early on in a project facilitates for the affected people to deal with changes and trade-offs resulting by the project. / Byggbranschen har idag ett större fokus på att använda hållbara metoder i byggandet för att på så sätt nå ett mer hållbart samhälle, men saknar fortfarande fokus på den sociala aspekten inom hållbarhet. För att lyckas med att planera och bygga hälsosamma och hållbara samhällen måste de här aspekterna bli en naturlig del i byggprojekten. En metod för att lyckas med detta kan vara användandet av Social Konsekvensbeskrivning, en metod som ofta används i länder som USA, Australien och Canada. Syftet med detta examensarbete är att undersöka hur denna metod kan användas, men också hur allmänheten på bästa sätt kan bli involverade i beslut som berör dem själva. För att komplettera teorin som använts i arbetet har en case study gjorts inom Järvalyftet, ett av dagens största ombyggnadsprojekt i Stockholmsområdet. En SKB berör många olika områden och frågor och är därför en komplex process att genomföra. Det är följaktligen viktigt att skapa en grupp med varierande yrkesdiscipliner för att hantera arbetet och möta de olika problemen på bästa möjliga sätt. Arbetet visar på att allmänhetens deltagande är av stor betydelse för att skapa förankring bland berörda parter då ett projekt planeras, för att på så sätt minska både projektets tidsram och kostnad. Vidare visar även arbetet att involvering av allmänheten i ett tidigt skede av projektet underlättar för de berörda att hantera de förändringar och avvägningar som projektet medför.

Contexte : La pression croissante sur les soins primaires nécessite de développer des approches adaptées pour apprécier la valeur des innovations dans ce domaine et identifier les conditions favorables à leur diffusion, ce qui peut s'avérer difficile, puisque ces innovations sont souvent complexes et de nature organisationnelle. Objectifs : Explorer les arguments de valeur de 10 innovations identifiées comme prometteuses lors des symposiums sur les innovations du Collège québécois des médecins de famille et proposer des pistes pour leur bonification et diffusion. Méthodes : Approche délibérative multidimensionnelle avec un panel diversifié de 12 cliniciens, gestionnaires, patients et citoyens. À partir de données synthétisées par dimension, chaque participant a apprécié le potentiel de valeur des innovations par un score et des arguments justificatifs pour chaque dimension individuellement et suite à une délibération. Le potentiel de valeur moyen a été calculé par innovation, les arguments ont fait l’objet d’une synthèse qualitative. Ces résultats ont informé une seconde délibération visant à identifier des pistes d’amélioration et diffusion qui ont été organisées par analyse thématique. Résultats : Les innovations d’adaptation de l'organisation des soins aux populations vulnérables ont été considérées comme ayant le plus grand potentiel de valeur dans l’ensemble. Les innovations visant l’optimisation des processus cliniques et d’amélioration continue ont reçu des appréciations plus variables. 460 pistes ont été classées en six catégories : objectifs, modalités d’accès, fonctionnement, impacts, gouvernance et contexte externe. Conclusions : L’exploration du potentiel de valeur d’innovations complexes avec une approche délibérative multidimensionnelle permet d’identifier, pour certaines catégories d’innovations en soins primaires, des arguments de valeur communs, et facilite l’identification de pistes d’amélioration et diffusion. / Context: The increasing pressure on primary care calls for the development of appropriate approaches to assess the value of innovations in this field and identify the conditions for their diffusion, which can be difficult, as these innovations are often complex and organizational in nature. Objectives: To explore the value arguments of 10 innovations identified as promising during the Quebec College of Family Physicians' Innovation Symposia and to propose avenues for their improvement and diffusion. Methods: Multidimensional deliberative approach with a diverse panel of 12 clinicians, managers, patients and citizens. Using data synthesized by dimension, each participant assessed the value potential of the innovations by providing a score and supporting arguments for each dimension individually, and following group deliberation. The average value potential was calculated per innovation, and the arguments were qualitatively synthesized. These results informed a second deliberation aimed at identifying avenues for improvement and deployment that were organized by thematic analysis. Results: Innovations aimed at adapting the organization of care for vulnerable populations were considered to have the greatest value potential overall, while interventions aimed at optimizing clinical processes and continuous improvement received more variable appraisals. 460 avenues were categorized into six areas: objectives, access modalities, operations, impacts, governance, and external context. Conclusions: Exploring the value potential of complex innovations with a multidimensional deliberative approach allowed the identification of common value arguments for certain categories of primary care innovations and facilitated the identification of pathways for their improvement and dissemination.