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The article applies the citizen science phenomenon – i.e. lay people involvement in research endeavours aimed at pushing forward scientific knowledge – to healthcare. Attention is paid to initiatives intended to tackle the COVID-19 pandemic as an illustrative case to exemplify the contribution of citizen science to system-wide innovation in healthcare.

A mixed methodology consisting of three sequential steps was developed. Firstly, a realist literature review was carried out to contextualize citizen science to healthcare. Then, an account of successfully completed large-scale, online citizen science projects dealing with healthcare and medicine has been conducted in order to obtain preliminary information about distinguishing features of citizen science in healthcare. Thirdly, a broad search of citizen science initiatives targeted to tackling the COVID-19 pandemic has been performed. A comparative case study approach has been undertaken to examine the attributes of such projects and to unravel their peculiarities.

Citizen science enacts the development of a lively healthcare ecosystem, which takes its nourishment from the voluntary contribution of lay people. Citizen scientists play different roles in accomplishing citizen science initiatives, ranging from data collectors to data analysts. Alongside enabling big data management, citizen science contributes to lay people's education and empowerment, soliciting their active involvement in service co-production and value co-creation.

Citizen science is still underexplored in healthcare. Even though further evidence is needed to emphasize the value of lay people's involvement in scientific research applied to healthcare, citizen science is expected to revolutionize the way innovation is pursued and achieved in the healthcare ecosystem. Engaging lay people in a co-creating partnership with expert scientist can help us to address unprecedented health-related challenges and to shape the future of healthcare. Tailored health policy and management interventions are required to empower lay people and to stimulate their active engagement in value co-creation.

Citizen science relies on the wisdom of the crowd to address major issues faced by healthcare organizations. The article comes up with a state of the art investigation of citizen science in healthcare, shedding light on its attributes and envisioning avenues for further development.

The purpose of this study is to investigate the informal micro-level mechanisms through which caregivers maximize their health literacy and caregiving skill-set, particularly in cases of emergent, pervasive health disorders. Specifically, I investigate how important micro-level social factors, such as lay self-education and local community networks, mitigate extensive experiences of medical uncertainty that are associated with caring for a child with autism. This study theorizes a series of processes of becoming lay health care professionals (HCP), which serve as effective health care interventions and ways to secure vital resources for patients and their families.

This study uses qualitative research methods in the form of 50 individual intensive interviews with primary caregivers of at least one child under the age of 18 with an official autism diagnosis, as well as two years of participant-observation at two primary sites that are autism parent and caregiver resource meetings, both located in Northern California.

This study first demonstrates the major institutional limits and gaps involved in health-related caregiving for children with autism. Next, I define the processes through which caregivers challenge these institutional constraints and fight for life altering resources for their families, which include becoming a lay diagnostician and expert caregiver. Here, I demonstrate a sophisticated set of health literacy skills and key local community-based ties that caregivers develop and rely on, which affords families the tools to overcome diverse institutional obstacles in health-seeking and health care access.

The families in this study are predominantly white, middle-class, and reside in California. For future research, the scope of the study could be expanded by increasing the sample size and including greater geographic and demographic diversity.

This study contributes vital, yet missing, pieces to the autism puzzle, which currently focuses on prevention, the fight for a so-called “cure,” and the role of vaccines in disorder prevalence. In the meantime, families are living with autism each day and are struggling for understanding and knowledge, and to secure adequate support services. In doing so, this study sheds light on current institutional gaps and limits in health care and delivery for children with autism, and suggests specific effective health care interventions applicable to other cases of emergent illnesses and disorders.

This paper presents the results of a detailed comparison of the perceptions by individual consumers and expert financial advisers of the investment risk involved in various UK personal financial services' products. Factor similarity tests show that there are significant differences between expert and lay investors in the way financial risks are perceived. Financial experts are likely to be less loss averse than lay investors, but are prone to affiliation bias (trusting providers and salesmen more than lay investors do), believe that the products are less complex, and are less cynical and distrustful about the protection provided by the regulators. The traditional response to the finding that experts and non‐experts have different perceptions and understandings about risk is to institute risk communication programmes designed to re‐educate consumers. However, this approach is unlikely to be successful in an environment where individual consumers distrust regulators and other experts.

This paper sets out to examine the degree to which General Finnish Thesaurus (GFT) and FinMeSH cover various semantic expressions of medical concepts in patients' questions and physicians' answers concerning cardiovascular diseases. The former represents lay persons' information needs.

A total of 50 question‐answer pairs were collected in a medical web site. Concepts and their expressions (terms) with their semantic relations were identified in questions and answers.

FinMeSH covered 65 per cent and GFT 41 per cent of all medical terms in texts. The expressions of patients and physicians matched better with FinMeSH than GFT regardless of the type of expression. The difference in favour of FinMeSH was typically about 25 per cent‐units.

The low fit with users' vocabularies makes GFT a poor tool for supporting searching, whereas the relatively high fit of FinMeSH suggests that it is a reasonable tool in assisting searching. Conclusions concerning the bridging of these two thesauri are discussed.

Accounting’s definition of accountability should include attributes of socioenvironmental degradation manufactured by unsustainable technologies. Beck argues that emergent accounts should reflect the following primary characteristics of technological degradation: complexity, uncertainty, and diffused responsibility. Financial stewardship accounts and probabilistic assessments of risk, which are traditionally employed to allay the public’s fear of uncontrollable technological hazards, cannot reflect these characteristics because they are constructed to perpetuate the status quo by fabricating certainty and security. The process through which safety thresholds are constructed and contested represents the ultimate form of socialized accountability because these thresholds shape how much risk people consent to be exposed to. Beck’s socialized total accountability is suggested as a way forward: It has two dimensions, extended spatiotemporal responsibility and the psychology of decision-making. These dimensions are teased out from the following constructs of Beck’s Risk Society thesis: manufactured risks and hazards, organized irresponsibility, politics of risk, radical individualization and social learning. These dimensions are then used to critically evaluate the capacity of full cost accounting (FCA), and two emergent socialized risk accounts, to integrate the multiple attributes of sustainability. This critique should inform the journey of constructing more representative accounts of technological degradation.

Purpose – This research explores how social movement activists work to influence the framing of oil spill impacts, and related scientific and political processes. It focuses on the Louisiana Bucket Brigade (LABB), an environmental justice organization that has worked in the Gulf Coast, and looks particularly at the experience of the 2010 Deepwater Horizon Oil Spill.

Design/methodology – Research is based on qualitative interviews, ethnographic observations, and video data with local social movement organizations, grassroots groups, spill workers, fishermen, local residents, scientists, and government representatives during three time periods, in 2010 within five months of the spill, Fall of 2011, and Summer of 2012.

Findings – Legal institutional constrictions inherent in official oil spill assessments and cleanup processes fostered a transformation in activist tactics and the communities they seek to represent.

Originality/value of the paper – Social movement activism has not often been studied in response to an oil spill. This chapter demonstrates how such an event shapes activism, and how activism has an effect on local responses to the event.

Purpose – To consider the emerging qualitative approaches that consider the future, exploring ways in which these may be better used to complement and extend established practice in global climate models.

Methodology/approach – A review of contemporary modelling approaches that consider the future for transport applications, with a focus on complexity and uncertainty issues, the search for foresight, the role of engagement and the credibility of qualitative foresight.

Findings – The importance of the need to incorporate socio-economic scenarios in climate change models and the possibilities offered by the tool of systematic qualitative foresight are demonstrated.

Originality/value – Explores limitations of quantitative modelling approaches to foresight and introduces a potentially complementary, innovative approach based on the systematic use of qualitative methodologies.

This chapter uses the concept of real-world experiments to describe ecological activity that occurs in the wider human community. The case discussed is an ecological restoration project at Montrose Point, a peninsula in Lake Michigan on the North Side of Chicago. In the restoration of Montrose Point, the scientific importance of ecological science is not juxtaposed with the seemingly irrational ideas of the human community, but the human community becomes a part of scientific work. Like experiments in the laboratory, real-world experiments often bring surprises. However, if ecological restoration is recognized to be inherently uncertain, surprises become opportunities to learn rather than failures. The chapter concludes with a discussion how a real-world experimental strategy can help to handle surprises via alternate phases of corroboration by recursive practice.

Purpose – Recent research on the modes of patient activism has displaced older notions of patients as passive, compliant subjects of biomedical power. This chapter expands analyses of patient activism to examine the intersections between the processes of identity formation, the emergence of a new scientific field (human stem cell research), and political institutions.

Methodology – This chapter uses in-depth interviews, ethnographic techniques, and textual analyses to collect data regarding California's 2004 ballot initiative, Proposition 71, The California Stem Cell Research and Cures Act. Data were analyzed using a situational analysis approach. Situational analysis is a variant of grounded theory that organizes data in the form of maps of connections between actors and social worlds.

Findings – This chapter examines the content and significance of this event through the construction of a collective identity among supporters of Proposition 71, what I call “stem cell activists.” The construction of this collective identity serves as an important ground from which individuals and groups carve out political claims of self-representation. Stem cell activists also helped pass a controversial initiative through the efforts in publicly supporting Prop 71 and human stem cell research.

Research limitations – This research is limited in that it only examined individuals who became stem cell activists, and not individuals from whom this identity failed to gain salience. More research is needed to understand the conditions under which this identity becomes incorporated within a person's political repertoire.

Value of chapter – This chapter brings together theoretical perspectives on the symbolic aspects of identity construction and the political economy of biomedical science. This chapter will be of interest to scholars in medical sociology, science and technology studies, and social movement researchers.