Co-creation methodology with Smart technologies in Health and well-being to enable communication between isolated and disperse small communities: a literature review

Objective: The objective is to determine reported cases of co-creation methodology about the use of smart technologies in public spaces in order to create new forms of social interactions and practices, which in turn creates new socio-spatial relations and promotes interactions and communication between isolated and disperse communities. Methods: The literature published in the last 5 years (2016-2020) has been reviewed. Searches on Co-creation methodology and ICTs in Health and Biomedicine, on topics such as interaction among users, ICT and social behaviour, spatial analyses, planning methodologies and public involvement, on-line gaming, self‐learning, and the prevention of risky habbits are made manually. Results: Search strategies developed through electronic databases and manual search identified a total of 180 references, included in the supplementary material. They have been divided by the technologies used in the studies, co-creation methodology, and according to the type of socio-medical application. This research highlights the penetration of ICT in social and healthcare environments and clearly demonstrates the high number of publications that have come out over recent years and a lack of publications that evaluate co-creation methodology in this field. Conclusions: Most of the papers included only partially cover the subject matter of ICT in Health and Biomedicine and how to use smart technologies to transform public spaces in small communities into people-friendly human environments. The research carried out for this paper clearly demonstrates the high number of publications concerning technology assessment. However, there is a distinct lack of publications that evaluate co-creation methodology.

Incorporating Public Participation in Offshore Wind Farm Siting in Greece

The public acceptance of Offshore Wind Farms (OWFs) is an important issue that is expected to depend highly on their site location. Public involvement in decision-making processes is recommended as it may contribute to the mitigation of opposing, delaying and even blocking OWF projects, as well as increasing future public confidence and support. The aim of this study is to identify the most suitable sites for OWFs deployment in Greece based on citizens’ preferences and judgments. The methodology consists of three phases: (i) identification of Eligible Marine Areas (EMAs) for OWF siting by deploying ten exclusion criteria, (ii) prioritization of six evaluation criteria and ranking of EMAs according to citizens’ judgments through an Online Questionnaire Survey (OQS) and (iii) overall prioritization of EMAs. The Analytic Hierarchy Process (AHP), supported by Geographic Information Systems (GIS) and the OQS are used for the analysis. The results illustrate the priority ranking of thirteen EMAs for OWFs deployment in the Greek marine environment under five different scenarios. The most suitable sites are located in the South-West zone offshore of Rhodes in all the examined scenarios. Sustainable development is a challenging social process, and the different preferences of the society should be integrated in planning processes.

ACCEPTANCE: protocol for a feasibility study of a multicomponent physical activity intervention following treatment for cervical cancer

IntroductionCervical cancer treatment can have life changing sequelae and be associated with poor short-term and long-term quality of life. Physical activity (PA; that is, bodily movement) is known to improve health outcomes and quality of life for cancer survivors, both physically and psychologically. To date, no interventions to increase PA following cervical cancer have been evaluated. This study aims to (1) determine the feasibility of conducting a PA intervention after cervical cancer and (2) to explore the acceptability of the programme and evaluation measures.Methods and analysisThe design is a pre study and post study design. Thirty participants aged between 18 and 60 years from the Midlands region, UK, who have completed primary treatment for cervical cancer at least 6 months previously and do not meet the national PA guidelines will be recruited. Identification of potential participants will take place through the University Hospitals of Leicester National Health Service (NHS) Trust. Participants will receive an intervention focused on increasing PA through the provision of education, action planning, goal setting, problem solving and self-monitoring of PA behaviour, particularly steps per day. Device assessed PA and questionnaires will be completed at baseline, week 6, week 12 and week 24. Feasibility will be assessed in terms of recruitment, retention, attrition, completion of measures and intervention compliance, for which specific feasibility criteria have been established. The process evaluation will explore the experiences and acceptability of the intervention components and evaluation measures.Ethics and disseminationEthical approval has been granted by the West of Scotland Research Ethics Committee 1 for this study. Results will inform intervention refinement for the design of a definitive pilot trial. These results will be disseminated via peer-reviewed publications and international conferences while input from a patient and public involvement (PPI) group will inform effective ways to circulate results among the wider community.Trial registration numberISRCTN16349793, Registered 30 September 2020.

Centrality of Youth Engagement in Media Involvement

Contextualized within the popularity of new media, youth engagement is a very important concept in the practice of public involvement. Guided by the current literature on youth engagement and media studies, this chapter examines the key engagement-related notions involving youth and media usage. Being informed by a variety of case studies on youth engagement through the use of media within various contexts globally, the chapter discusses the opportunities and challenges of engaging youth through media involvement. The specific notions covered in this chapter include (1) the role of “hybrid” media in youth engagement, (2) “intersectionality” illustrating the diversity of youth populations and their media usage, (3) meaning-making through media involvement among youth, and (4) building global social relationships and social and cultural capital through youth's media usage. Importantly, the use of new media can be seen as a means of reclaiming and reshaping the ways in which youth are engaged, as key meaning-making processes, to address personal, social, and cultural issues.

Evaluasi program sosialisasi vaksinasi covid-19 melalui media sosial

One of the evaluation parameters that can measure the effectiveness of socialization programs through social media is citizen engagement, namely public involvement in important or essential problems on social media. This evaluation was conducted to analyze the effectiveness of the Covid-19 vaccination socialization program through social media. The object of the evaluation is the netizen conversations on Twitter in the form of messages, statuses, or tweets that mention the keyword 'COVID-19 Vaccine' on social media. The effectiveness criteria of the socialization program were based on the citizen engagement index or the citizen involvement index which is examined from the netizen opinions on sentiment (positive/negative) and emotion (trust/fear) indicators. The evaluation results show that the socialization program has succeeded in increasing positive sentiment and emotions of trust. Positive sentiment was shown by netizens' opinions, which were dominated by posts that supported and accepted the vaccination program. Emotion of trust was dominated by the trust and acceptance posts. This finding, when confirmed with facts in the community, indicates a conformity. The public has supported, approved, trusted and accepted the Covid-19 vaccination.Salah satu parameter evaluasi yang dapat mengukur keefektifan program sosialisasi melalui media sosial adalah citizen engagement, yaitu keterlibatan publik terhadap suatu problematika penting atau yang dianggap penting di media sosial. Evaluasi ini dilakukan untuk menganalisis keefektifan program sosialisasi vaksinasi Covid-19 melalui media sosial. Objek evaluasi adalah percakapan warganet di Twitter baik berupa pesan, status, maupun tweet yang menyebutkan kata kunci ‘Vaksin COVID-19’ di media sosial. Kriteria keefektifan program sosialisasi mengacu kepada citizen engagement index atau indeks keterlibatan warganet yang dianalisis dari opini warganet pada indikator sentimen (positif/negative) dan emosi (trust/fear). Hasil evaluasi menunjukkan Program sosialisasi berhasil meningkatkan sentiment positif dan emosi trust. Sentimen positif ditunjukkan opini warganet yang didominasi unggahan mendukung dan menyetujui vaksinasi. Emosi trust, didominasi oleh unggahan rasa percaya dan menerima. Temuan ini apabila dikonfirmasi dengan fakta di masyarakat, mengindikasikan adanya kesesuaian. Masyarakat telah mendukung, menyetujui, percaya, dan menerima vaksinasi Covid-19.

United Kingdom Freedom of Information Act 2000, Local Government and Everyday Regimes of Practice

The United Kingdom’s Freedom of Information Act 2000 commenced in 2005 with the objectives of openness and transparency, accountability, better decision making and public involvement in decision making. However, there have been limited studies of its long-term impacts on government practices and how far the Act has delivered on its stated objectives, and even fewer studies into how Freedom of Information works in practice, especially at local government level. Addressing these gaps in existing knowledge, this research seeks to critically evaluate existing regimes of practices across local authorities. It seeks to identify the multiple practices surrounding the implementation of the 2000 Act, evaluate how these practices are reproduced, and generate lessons for practice and alternative modes of delivering Freedom of Information.

The Role of EUPATI CH in Promoting Patient Involvement in Clinical Research: A Multi-Stakeholder Research Project

Background: The European Patients' Academy on Therapeutic Innovation Switzerland (EUPATI CH) was established as an association in 2016 with the mission to improve patient empowerment in Switzerland, raise public awareness of EUPATI's education material, and foster multi-stakeholder partnerships in order to promote public involvement in all aspects of medicines research and development (R&D). In order to achieve its goal of improving patient involvement (PI) in all processes of medicines R&D in Switzerland and to obtain guidance and recommendations for future activities, EUPATI CH initiated a multi-stakeholder survey on PI experiences, hurdles, and best practices. The survey enabled EUPATI CH to obtain and analyze the views of various stakeholders and shape its workplan.Methods: Data collection occurred between January and July 2019 using a survey and semi-structured interviews with individual stakeholders from different groups. The online survey responses were analyzed using quantitative methods and the interviews were analyzed using qualitative methods.Results: The online survey was completed by 55 respondents (10%), and the semi-structured interviews were conducted with 14 stakeholders. Respondents to the online survey were patient representatives (45%), researchers from academia (25%), individuals from the pharmaceutical industry (9%), healthcare professionals (23%), and representatives from government agencies (6%). Some respondents were also members of EUPATI CH. Thirty-eight percent of respondents consider PI in Switzerland to be limited or absent. They identified the main barriers to PI as, first and foremost, a lack of funds and human resources (65%), followed by a lack of information and a lack of education on how to become a patient advocate (21%), a lack of collaboration with other stakeholders (16%), and a lack of adequate resources. Respondents' expectations of EUPATI CH's role in supporting PI were to provide education for active PI and improve networking and collaboration among stakeholders.Conclusions: EUPATI CH's multi-stakeholder research identified some of the difficulties in promoting PI in medicines R&D in Switzerland, in particular the complex collaboration among stakeholders and a lack of funds, human resources, and knowledge. To respond to these difficulties, EUPATI CH has begun preparing a basic training course for patients that is adapted to Switzerland.

Therapies for Long COVID in non-hospitalised individuals - from symptoms, patient-reported outcomes, and immunology to targeted therapies (The TLC Study): Study protocol

Introduction Individuals with COVID-19 frequently experience symptoms and impaired quality of life beyond 4-12 weeks, commonly referred to as Long COVID. Whether Long COVID is one or several distinct syndromes is unknown. Establishing the evidence base for appropriate therapies is needed. We aim to evaluate the symptom burden and underlying pathophysiology of Long COVID syndromes in non-hospitalised individuals and evaluate potential therapies. Methods and analysis A cohort of 4000 non-hospitalised individuals with a past COVID-19 diagnosis and 1000 matched controls will be selected from anonymised primary care records from the Clinical Practice Research Datalink (CPRD) and invited by their general practitioners to participate on a digital platform (Atom5TM). Individuals will report symptoms, quality of life, work capability, and patient reported outcome measures. Data will be collected monthly for one year. Statistical clustering methods will be used to identify distinct Long COVID symptom clusters. Individuals from the four most prevalent clusters and two control groups will be invited to participate in the BioWear sub-study which will further phenotype Long COVID symptom clusters by measurement of immunological parameters and actigraphy. We will review existing evidence on interventions for post-viral syndromes and Long COVID to map and prioritise interventions for each newly characterised Long COVID syndrome. Recommendations will be made using the cumulated evidence in an expert consensus workshop. A virtual supportive intervention will be coproduced with patients and health service providers for future evaluation. Individuals with lived experience of Long COVID will be involved throughout this programme through a patient and public involvement group. Ethics and dissemination Ethical approval was obtained from the Solihull Research Ethics Committee, West Midlands (21/WM/0203). The study is registered on the ISRCTN Registry (1567490). Research findings will be presented at international conferences, in peer-reviewed journals, to Long COVID patient support groups and to policymakers.

Innovative Patient Involvement During Covid-19: Keeping Patients at the Heart of HTA

The COVID-19 pandemic and lockdown measures in the United Kingdom resulted in significant challenges and created opportunities for innovation to keep patients at the heart of HTA. The introduction of the Coronavirus Act 2020 and the associated public health guidance meant that NICE's conventional HTA methods were no longer feasible. NICE introduced rapid, innovative updates to patient and public involvement (PPI), decision-making meetings, and consultations to harness the expertise of patients and the public to ensure guidance addressed the expected concerns and identified barriers which could impact access. This article describes the PPI support for NICE's rapid shift to virtual meetings and virtual engagement. We utilize the authors' experience and patient and public contributor feedback to understand the experience of participating in a virtual setting and identify four themes: accessibility; inclusivity; transparency; and intrapersonal relationships and committee dynamics. The article also considers how patient representatives participated in, and facilitated, the development of guidance for a hypothetical technology to keep patients and the public at the heart of expedited and novel HTA processes to identify and understand the expected patient concerns and potential barriers for when a technology would be introduced.