Foregrounding Values through Public Participation: Eliciting Values of Citizens in the Context of Mobility Data Donation

What is the Impact of Broadband Bandwidth Variability on Quality of Life?: Lessons from Sweden

Clinical practice guidelines have been critiqued for prescribing standardized care that neglects patients’ personal circumstances and knowledge in health care decisions. To make care more patient centred, standard-setters are urged to involve patients and the public in guideline development and use. Despite widespread principled support for such Patient and Public Involvement (PPI), the underlying principles guiding PPI in standardization of care are mired on confusion and contradiction. Based on the PPI literature in general, and informed by empirical research on guideline development, it is possible to identify three rationales that justify PPI in clinical standard setting. Each rationale gives rise to a conceptual model which outlines a distinct purpose of participation, who is to be included, and what they are expected to contribute. The Consumer Choice model aims to involve autonomous consumers to personalize clinical care. The Democratic Voice model aims for health care recommendations to better reflect collective values of citizens. The Lay Expertise model aims to re-contextualize universal evidence by including experiential patient knowledge. However, these models can and should not function as ‘Gold Standards’ to be consistently followed in practice. First, the models rely on two distinct types of representation, resulting in contradictory notions of how to be a good representative. Second, imposing models on practice requires a top-down control that is practically and politically problematic. Not only is control difficult to achieve, it may compromise the participatory ideal of participants co-determine practice, and may result in excluding the values and views of ‘real’ patients and public entirely.

Drawing on the data from an online survey and a focus group, the article explores the public participation of citizens with a focus on participatory planning processes. The exploratory research tackles participatory initiatives and interactions between citizens, public administration, and professionals that aim to improve the well-being of citizens in their cities of residence. The research employed a theoretical view of collaborative public participation, one that is not, however, confined to a dualistic approach, but one in which the citizens value the existence of intermediary actors or structures to guide public participation. Moreover, adversarial potential in participatory planning processes is not excluded, especially as participation involves a diverse network of actors. In the context of a significant consensus regarding the importance of citizen participation in all stages of decision making, the article shows that there is, however, a low level of information regarding participatory planning processes.

У статті проаналізовано стандарти співпраці влади і громадянського суспільства, визначено сутність, завдання і форми взаємодії органів влади та інститутів громадянського суспільства. 
 Висвітлено регламентуючі документи Європейського Союзу щодо взаємодії органів публічної влади та громадянського суспільства.
 Окреслено принципи та стандарти взаємодії влади та інститутів громадянського суспільства.
 Проаналізовано особливості, специфіку та умови ефективної взаємодії громадянського суспільства й органів публічної влади в країнах-членах ЄС.
 Показано що у більшості країн ЄС законодавство передбачає створення спеціальних органів, які діють на постійній основі, наприклад, консультативні органи з питань захисту прав споживачів та довкілля, охорони здоров’я за участю відповідних інститутів громадянського суспільства, що відіграють ключову роль у процесах прийняття рішень органами публічної влади у визначених їх компетенціями сферах.
 Встановлено, що ефективною моделлю взаємодії громадянського суспільства і органів публічної влади є співпраця за умов певного збігу інтересів та ціннісних установок окремих громадян і соціальних груп з органами публічної влади.

The rapidly evolving landscape of the global COVID-19 pandemic necessitates urgent scientific advances and adaptive behavioural and policy responses to contain viral transmission, reduce impacts on public health, and minimise societal disruption. Epidemiological models of SARS-CoV-2 transmission are heavily influencing policy responses, forecasting viral infection, transmission, and death rates under simplified representations of human behaviour. They either assume that all members of a population or demographic group behave identically or design individual behavioural rules based on demographic and mobility data. In pluralistic societies, however, individual behavioural responses vary with personal values, situational contexts, and social group identities, affecting policy compliance and viral transmission. Here, I identify and explore the impacts of salient viral identities or “COVID-19 personality types” that are emerging and fluidly coalescing with each other and existing social and political identities. The resultant heightened inter-group differentiation explains the politicisation of the pandemic and rampant racism, discrimination, and conflict observed now and with epidemics historically. Recognising salient COVID-19 behavioural identities can improve scientific forecasting of SARS-CoV-2 transmission and the impact of containment measures, as well as tailor nuanced policy interventions and communications to enhance individual coping and compliance. As governments contemplate easing social-distancing restrictions, the science-society-policy nexus needs fortification through public participation, structured deliberation, and evidence-informed decision-making of policy options to negotiate the complex value trade-offs among public health, the market economy, and civil liberty. By thus valuing human diversity to foster societal resilience, an ethical agenda can be set with a united response to the COVID-19 pandemic and global commons challenges whose impacts are less immediate, but no less dire for humanity.

<b>PB-PG-0407-13084 – NIHR Research for Patient Benefit Programme – Final report</b><br /> <br /> <b>Project title: </b>Improving the quality of ambulance crew hand-overs: a qualitative study of knowledge transfer in emergency care teams<br /> <br /> <b>Authors:</b> Professor Robert Crouch - University Hospital Southampton NHS Foundation Trust<br /> Mr Mark Ainsworth-Smith - South Central Ambulance Service NHS Foundation Trust<br /> Professor Charles Deakin - South Central Ambulance Service NHS Foundation Trust<br /> Professor Valerie Lattimer - University of East Anglia<br /> Mr Stephen Murray - Health Education South West<br /> Professor Catherine Pope - University of Oxford<br /> Mrs Fizz Thompson - South Central Ambulance Service NHS Foundation Trust<br /> <br /> <b>Plain language summary</b><br /> <br /> Nationally, ambulance crews make over 3 million patient journeys a year. These journeys involve the ‘handover’ of information between patients, crews and hospital staff. Our research looks in detail at these journeys and handover communication. We observed ambulance journeys and transfers to hospital, interviewed staff and patients, and examined patient records. We studied verbal, written and non-verbal communication across the patient journey to describe handover, and how it is affected by patients, staff&nbsp; and technologies. We explored how information, experience and knowledge is combined to create an understanding of the patient, and identified some of the problems (i.e. information decay, communication failures) which may lead to handover breakdown. We hope that these findings will inform practice and training for handover and contribute to improving communication and patient safety.<br /> Handover transfers information and responsibility. It occurs when the ambulance is assigned, at scene, on the ambulance and at hospital. Verbal transfer of information occurs between patients/public/carers, health and other professionals (e.g. police, crew, nurses). Written information can be paper or digital. Non-verbal communication includes gestures and facial cues. Multiple transfers of information/responsibility occur in a single journey, at different times and places. Communication can be affected by behaviour (e.g. it is difficult obtaining information from people under the influence of alcohol) relationships (e.g. between different professions or teams) and technologies (e.g. telemetry – equipment that transfers information remotely).<br /> Handover in the pre-hospital setting is more frequent and complex than usually acknowledged. Staff combine different sources of information with experiential and clinical knowledge to build up an understanding of the patient. Huge amounts of information are collected in a short time, and there are a number of potentially critical points and reasons why communication can breakdown (e.g. information decay/loss, poor communication, distractions/interruptions, lack of trust, technology failure). This study provides the first detailed examination of handover. Training for pre-hospital care should consider the complexity of handovers and address potential risks.&nbsp;<br /> <br /> <b>Keywords</b><br /> Handover; communication; pre-hospital setting; ambulance; emergency care; patient journey; information transfer; qualitative research.<br /> <br /> <b>Summary of research findings</b><br /> BACKGROUND: Handover is a vital but poorly described part of pre-hospital care. Effective handover enables continuity of care, patient safety, faster decision-making and better record keeping (1-6) . Previous research has focussed on hospitals and/or nurses, and on views and experiences (largely from staff perspectives, not patients), or used observation, including quasi-experimental studies with simulated patients testing new training or standardised procedures.&nbsp; Ambulance crews have been shown to provide accurate handovers (6,7) but other research highlights poor communication (8). Written communication is believed to reduce information loss but structured procedures can reduce accuracy and retention (6,9-14). Numerical values are more likely to be forgotten than descriptions and information provided at the beginning of the handover is more likely to be recalled (15,16) . Information passed via a third person is often distorted or lost (2,7,8,10-12). There is more information decay in resuscitation rooms than wards (5 12). Ambulance crews report difficulties in delivering handovers (6,8,16-19) and studies have shown that time pressures and distractions prevent good handovers (1,3,5,7,8,13,15,18).&nbsp;<br /> <br /> AIM: The aim of this study was to describe and understand the process of handover and show how this impacts on patient care.<br /> <br /> OBJECTIVES: The study employed an ethnographic case study design, using real time observation and video, interviews and documentary analysis to: <ul> <li>Provide a unique and detailed description of handover processes&nbsp;</li> <li>Compare the content and use of different types of information (e.g. written and verbal)</li> <li>Critically examine handover and consider its impact on patient care.</li> </ul> <br /> METHODS: We observed 223 ambulance journeys on 56 shifts at different times/days over 18 months from 2009-11. 109 patients consented to the inclusion of their data in the study. We estimated needing 120 patients but ‘data saturation’ (no more emerging themes) occurred earlier than this. Contemporaneous notes were taken to describe verbal, written and non-verbal communication and the technologies used in handover: notes were anonymised and transcribed. Video recordings and photographs were taken to supplement the notes.<br /> 19 semi-structured interviews were conducted with crew, staff and patients to understand handover practice. These were audio-recorded, anonymised and transcribed. Anonymised copies of patients’ records were made for consented patients. Data were read independently, discussed collectively and coded, to develop themes and analytical categories. The analysis was inductive (from data) and deductive (guided by the proposal) and the findings below are structured around two overarching themes in line with the project objectives.&nbsp;<br /> <br /> KEY FINDINGS: Pre-hospital handovers are far more frequent and complex than usually acknowledged. 652 hours of observation covered 851 handovers during 109 (consented) patient journeys – approx 9 per patient, sometimes as many as 18. Handovers are verbal, non-verbal and written and occur in different environments, often where communication is difficult. Given this frequency and complexity, the risk of error is significant and should not be underestimated.<br /> <br /> i) Handover complexity&nbsp;<br /> The first handover of information occurs with the 999 call. Information is taken by a call handler and transferred digitally via a Mobile Data Terminal (MDT), or (less frequently) by radio or mobile phone. This information includes patient details, address and incident description.&nbsp; Receipt of this information may allow the crew to prepare and plan for the incident and gather appropriate equipment. At the scene (or patient’s home) carers, relatives and the patient provide verbal handover. Sometimes a first responder is at scene to provide a verbal handover that may include clinical observations and details of any treatment provided. Documents such as record forms, GP or hospital discharge letters and carer’s notes also provide information. Other objects – notably collections of prescribed medicines may be used to help the attending crew to understand the patient. Further information may be sought by contacting the Clinical Support Desk (CSD) or other health professionals by telephone.<br /> <br /> Various technologies are used at scene and on the ambulance to send information/data. Telemetry transfers written messages, clinical observations (e.g. ECG) to the Emergency Department and can allow two way communication between crew and hospital. Occasionally&nbsp; telephone or radio is used to convey this information, notably when technologies fail.<br /> <br /> The crew take details from the patient or carers and write this on the patient record form. They also commonly make notes on gloves. The collecting of information may be structured around the forms used, or less commonly, according to a memorised rubric or standardised template.<br /> <br /> At hospital crews transfer patients to triage, minors, majors or resuscitation bays/areas. Communication en route with hospital staff, and experience, tacit and formal and clinical knowledge informs decisions about handover processes.&nbsp; Crews may provide several handovers or partial information transfers to different hospital staff they encounter. In the majors and minors areas handover is given to the Rapid Assessment and Treatment (RAT) nurse. They often tailor what they say to different health professionals. While there is an expectation that handover will be listened to, this is not always met, and distractions and interruptions to verbal handovers are common. At the end of handover the formal transfer of responsibility is marked by the crew requesting a signature from the receiving nurse/doctor and the transfer of a copy of the signed paper Patient Report Form (PRF) to the hospital notes. Information may also be transferred to digital records, and crew may do this verbally, often dictating information to a nurse or administrator/clerical worker.<br /> <br /> ii) Challenges to handover<br /> The sheer frequency, the multiple locations, and numbers of people involved in handover make it extremely complex and challenging. While we were not in a position to clinically assess handover communication we witnessed many examples of good practice (for example assessing pain by asking the patient for a subjective score, providing medication for pain relief and re-checking the pain score). Crews, hospital staff (and indeed patients) manage the difficult tasks required for communication, often in difficult circumstances/settings and in a relatively short time frame. There are multiple transfers of information and responsibility throughout the patient journey. Handover information is used to inform decisions about diagnosis, treatment and management at the scene, on the journey and at transfer to hospital. The different environments and the people involved may make collecting and giving information difficult. Poor verbal communication skills, misunderstandings and inaccurate or illegible written or digital information can compromise handover and communication. Some decisions may be based on misinformation, or on value judgements, stereotypes and these may not enable best patient care.<br /> <br /> We note the following challenges or potential problem areas for ambulance handovers: <ul> <li>information decay: as information passes between multiple people it is more likely to get lost or changed.&nbsp; Lack of understanding or failure to see the relevance of information, withholding or forgetting will resulting in incomplete handover;</li> <li>partial information: if inaccurate or limited information is communicated this makes it harder for the receiving professional to plan and manage care effectively;</li> <li>lack of trust: if people providing information are regarded as competent, truthful and reliable, information is more likely to be used and or retained. Patients who appear to be under the influence of alcohol or drugs, less experienced staff or different professional groups may not be trusted and this can compromise handover;</li> <li>technology failures: equipment breakdown (notably telemetry) reduces the amount of information available and hinders transfer of information, repeated equipment failure produces scepticism and lack of trust;</li> <li>tacit knowledge and preconceptions: mobile data terminal messages may cause crew to construct preconceived ideas about the incident or the patient, for example based on location or prior knowledge and this may not always be helpful;</li> <li>difficult environments: crews often found that handovers were not listened to due to the noise levels, competing tasks, frequent interruptions and distractions.</li> </ul> <br /> CHANGES AND IMPACT ON THE FIELD<br /> <br /> SCAS and SUHT have collaborated on improvements to practice which have impacted handover. New technologies with better performance or enhanced functionality (e.g. mobile data transfer, satellite navigation) have addressed some of the challenges surrounding technologies. Training and continuing professional development has been used to improve the use of technologies (e.g. telemetry) and new operational directives have been emailed to staff to improve practice. Dr Crouch and Ms Thompson led the introduction of new standard operating procedures to clarify handover processes and responsibility, and a RAT nurse takes the initial handover information from crews.<br /> <br /> The research team has fed back to the advisory team and patient representative. This has informed some of the improvements noted above. We are engaged in further discussions about presenting findings to staff in both Trusts, and at local leadership training.<br /> <br /> CONCLUSIONS: Ambulance handover is complex and challenging. The number of different handovers (averaging 9 per journey), different people involved, types of information, the nature of the environments and tasks presents a range of potential risks. Our findings should be used and widely disseminated to inform training and practice.&nbsp;<br /> <br /> <b>Patient and public involvement</b><br /> It was not easy to identify relevant patient and public involvement due to the general (wide range of conditions) and emergency nature of the care studied.&nbsp; Unlike projects focussed on a single disease there is no single support group or network whom we could approach. Changes to the way PPI is organised also made identifying potential advisors difficult. We are grateful to our PPI contributor (Vice Chair Oxford and Bucks division of SCAS PPI Forum) for input to the research design, ethics application and early part of the project. In the analysis and closing phase of the project, the PPI advisor to SCAS kindly agreed to join the advisory group and has provided very helpful feedback about the report and our dissemination plans. We hope that we will be able to maintain this link with him as outputs are produced from the project.<br /> <br /> <b>Data sharing statement</b><br /> See link <a href="https://www.nihr.ac.uk/documents/nihr-position-on-the-sharing-of-research-data/12253">[https://www.nihr.ac.uk/documents/nihr-position-on-the-sharing-of-research-data/12253</a>] for the NIHR position of the sharing of research data.&nbsp; The NIHR strongly supports the sharing of data in the most appropriate way, to help deliver research that maximises benefits to patients and the wider public, the health and care system and which contributes to economic growth in the UK.&nbsp; All requests for data should be directed to the award holder and managed by the award holder.<br /> <br /> <b>Disclaimer</b><br /> This project is funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0407-13084). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.<br /> <br /> This project was carried out between April 2009 and March 2011. This final report has not been peer-reviewed. The report was examined by the Programme Director at the time of submission to assess completeness against the stated aims.

Citizen Science refers to the consultation, participation, engagement or involvement of the general public in research. Rationales for this interaction include increased public access and involvement of citizens in research, immersion of community values relevant to research, outreach and educational potential with the public, and ultimately, the democratization of science. This paper focuses on the specific subset of citizen science that seeks to engage "patient partners" in health research to gain the valuable experiential knowledge of those living with a disease. Greater patient engagement in research (PER) can provide researchers with insights about citizen values and needs relevant to determining research priorities, methodology, applications and ethical parameters; this would ideally lead to more effective real-world applications. Over the last decade, projects involving patients partners in research (PPR) have varied from mere tokenism and undervaluation to full involvement and empowerment of patient participants - the former, a subject of criticism, and the latter, promoted as an ideal. In this article, we will argue that the value of that experiential knowledge from patient partners in research should not only be acknowledged through its ongoing use, but also through recognition of participants who contribute to the creation and application of new knowledge. We will explore types of recognition that might be attributed to PPR, including scientific recognition; financial recognition or reward; personal and altruistic recognition; and the benefial outcomes of research applications. We will also consider whether such types of recognition could be applied to the broader field of citizen science.

This study purposed to analyze the application of New Public Service principles in bureaucratic reform through bureaucratic simplification policies at the Culture and Tourism Office of Bandung City. The research was conducted using descriptive qualitative methods. The data sources were collected through interviews, observations, and document studies. The results showed that the Department of Culture and Tourism of Bandung City has implemented New Public Service principles, such as: serving citizens, not customers; prioritizing public interests; respecting citizenship values; thinking strategically and acting democratically; multidimensional accountability; serving and empowering, leading; and respecting people, not just productivity. The application of these principles can be seen in programs such as online data and interview services, Bandung Creative Hub, intellectual property registration, collaboration with tourism stakeholders, art environment legalization programs, tax incentives for cultural heritage, and support for local art communities. This study concludes that the bureaucracy simplification policies of the Department of Culture and Tourism of Bandung have been implemented by promoting democratic values, public participation, and community service orientation, in line with the principles of New Public Service.

The development of a digital management system to support historical building assets’ management process based on public participation is the latest innovation in preservation, conservation, and restoration activities of historical buildings. In line with the importance of applying Good Governance principles in the 4.0 Industrial Revolution in Malang city government, it is essential to develop a Governance Digitalization system to support sustainable tourism in heritage tourism management. This study aims to establish a digital management framework system for Tangible Culture Heritage based on HBIM to manage historical building assets in Malang. This system focus on the cultural heritage assets of Malang City that represents the three developments in the Dutch Indies architectural style. The BIM capability implemented in historical buildings in Heritage Building Information Modeling (HBIM) terminology can bring complexity and depth of information to historical buildings towards a sustainable lifecycle heritage management framework. This research implements the 3D modeling automatic reconstruction method (3D Laser scanner) processed with Building Information Modeling (BIM) based software. The process consisted of 3 (three) stages: identifying and mapping Historical Landmark Buildings, developing 3D content models, and generating HBIM data viewer application. This study’s results reveal that using 3D laser scanning technology can accelerate the recording process and object modeling of the HBIM library, offering high accuracy and efficiency in recording complex structures and architectural elements. The final result of HBIM modeling is translated into interactively present the 3D model and 2D documentation of Historic Building Information Models through the HBIM mobile data viewer.

Mobile Tools for Community Scientists

The GLOBE Program's GLOBE Observer application is a free citizen science mobile data collection and visualization tool compatible with iOS and Android operating systems. Citizen scientists armed with the app can report the mosquito larval habitats they identify using the GLOBE Mosquito Habitat Mapper tool. This data can complement the climate, weather, and land cover data obtained from satellite measurements by scientists who develop risk models for mosquito‐borne diseases. Public participation in mosquito surveillance research provides the opportunity to obtain the volume, velocity and variety of data needed to fight the threat of vector‐borne diseases, especially in under‐resourced communities with minimal to no municipal surveillance and mitigation services. GLOBE Mosquito Habitat Mappers document and describe potential and active mosquito larval habitats in and around their homes and communities. An easy‐to‐use pictorial interface enables users to geolocate and describe oviposition sites encountered, count and identify mosquito larvae, and when appropriate, eliminate the larval habitats. During Mosquito Habitat Mapper's first 3 years of use, over 24,000 data observations have been reported throughout the world. This technical report summarizes GLOBE Mosquito Habitat Mapper data reported by GLOBE citizen scientists from three regions: Africa, Asia and the Pacific Islands, and Latin America and the Caribbean. Localized mosquito larvae distribution patterns were examined by comparing data collected in three cities in Senegal–Dakar, Touba, and Thilmakha. The Senegal data show habitat and genera differences among mosquitoes identified by citizen scientists in the cities and illustrates the potential of the app for community‐based surveillance and research.

A review of earth observation using mobile personal communication devices

State-enforced curtailment of mobility – through social distancing and national or subnational lockdowns – has become a key tool to reduce COVID-19 transmission. Panama instituted a sex-segregated mobility policy to limit people’s circulation whereby women were allowed to leave the home for essential services on Monday, Wednesday, and Friday; and men on Tuesday, Thursday, and Saturday. Through a retrospective analysis of Global Positioning System (GPS) data, this paper presents an overview of aggregate mobility patterns in Panama following the policy implementation. The paper looks at relative mobility for women and men, examining differences by volume and type of movement. The results identify lower visits to all community location categories on women-mobility days; however, we find no statistically significant difference in aggregate mobility to workplaces. The results discuss the implications of these findings and the ethical questions raised regarding the use of sex and gender identity in COVID-19 policies. HIGHLIGHTS Google mobility data provide a novel opportunity to examine population movement during lockdowns. Panamanian men appear less strict than women with stay-at-home orders during the COVID-19 lockdown. Lockdown policies may restrict women’s public participation. Public domestic activities may hold new value and inform household bargaining during COVID-19. Policies based on government-indicated sex reproduce inequalities for non-binary individuals.

Smartphones are now ubiquitous in daily life, requiring the development of accurate methodologies to study their impact on various aspects of human experience. A promising approach to collect mobile log data is to ask participants to donate, in the context of online surveys, the data that is already available to them through features such as iOS Screen Time and Android Digital Wellbeing. This approach grants participants control over the data they share while providing researchers with valuable observational insights into their mobile and app behaviours. However, the active involvement required from participants poses challenges, leading to low compliance rates and potential biases in the final sample of donors. This study investigates whether the method used to collect data donations, and the incentives provided, have an impact on compliance rates, and the subsequent composition of the sample. Specifically, we implemented a 2 × 3 between-subject web survey experiment (N = 872) in a research-led probability-based panel in Switzerland. Participants were randomly asked to capture and share their data through screenshots, video recordings, and by manual imputation (which we call enhanced recall). Results show that, while compliance rates are very low when using screenshots and video recordings as data donation methods, almost two thirds of participants donated their data by manually imputing their log data. We also found donors to be younger and more technologically adept. Overall, our study sheds light on maximising compliance in data donation studies, offering insights for researchers studying mobile and app usage.

This paper focuses on the role of contract as a governance mechanism in contemporary economic and social relations, exploring this theme in the context of recent writing on contract and contracting within law and other disciplines. The trends towards both outsourcing by private firms and privatization of public services have increased the importance of contract as an instrument of market and quasi-market exchange. Such organizational developments have been accompanied by institutional changes in the way in which business relationships are regulated through legal and extralegal norms and other constraints in the contractual environment. Contract is also being deployed increasingly as an instrument of regulation of social relations between the state and citizens in the fields of welfare, education and criminal justice. Following Macneil, the paper develops a methodology for assessing the quality of different types of relationship - between buyers and sellers, purchasers and providers, providers and consumers, regulators and regulatees, government and governed, and state agencies and citizens - according to the relationality of "contract" norms. Drawing on theories of responsive regulation, the paper explores the institutional and organizational conditions of responsive contractual governance in selected areas of market, quasi-market, and social relations. The underlying argument is that the core values of democracy, participation, and citizenship have a central part to play in the determination of responsive regulatory policy. We should aim to increase the level of public participation in decisions concerning organizational and institutional frameworks, so that citizen and consumer interests may adequately be represented in the determination of optimal forms of governance.