| 1. |
- Arnardottir, Steinunn, et al.
(författare)
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Long-term outcomes of patients with acromegaly: a report from the Swedish Pituitary Register
- 2022
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Ingår i: European Journal of Endocrinology. - : European Society of Endocrinology. - 1479-683X .- 0804-4643. ; 186:3, s. 329-339
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To describe the treatment and long-term outcomes of patients with acromegaly from all healthcare regions in Sweden. Design and methods: Analysis of prospectively reported data from the Swedish Pituitary Register of 698 patients (51% females) with acromegaly diagnosed from 1991 to 2011. The latest clinical follow-up date was December 2012, while mortality data were collected for 28.5 years until June 2019. Results: The annual incidence was 3.7/million; 71% of patients had a macroadenoma, 18% had visual field defects, and 25% had at least one pituitary hormone deficiency. Eighty-two percent had pituitary surgery, 10% radiotherapy, and 39% medical treatment. At the 5- and 10-year follow-ups, insulin-like growth factor 1 levels were within the reference range in 69 and 78% of patients, respectively. In linear regression, the proportion of patients with biochemical control including adjuvant therapy at 10 years follow-up increased over time by 1.23% per year. The standardized mortality ratio (SMR) (95% CI) for all patients was 1.29 (1.11-1.49). For patients with biochemical control at the latest follow-up, SMR was not increased, neither among patients diagnosed between 1991 and 2000, SMR: 1.06 (0.85-1.33) nor between 2001 and2011, SMR: 0.87 (0.61-1.24). In contrast, non-controlled patients at the latest follow-up from both decades had elevated SMR, 1.90 (1.33-2.72) and 1.98 (1.24-3.14), respectively. Conclusions: The proportion of patients with biochemical control increased over time. Patients with biochemically controlled acromegaly have normal life expectancy, while non-controlled patients still have increased mortality. The high rate of macroadenomas and unchanged age at diagnosis illustrates the need for improvements in the management of patients with acromegaly.
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| 2. |
- Castell, Nuria, et al.
(författare)
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Citizen Science for Environmental Governance in the Nordic Region
- 2023
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Ingår i: Fast Track to Vision 2030. - Oslo : NordForsk.
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- Environmental citizen science can be a great tool for a green, competitive, and socially sustainable Nordic Region. It fosters collaboration between citizens, researchers, communities, and authorities to collectively tackle environmental challenges, and encourages participation in decision-making processes related to environmental policies and conservation efforts. To advocate its importance and significance, this policy brief proposes four recommendations for the Nordic Council of Ministers and describes how best to connect and integrate environmental citizen science in the Nordic Region so as to achieve three relevant objectives of the Council's Action Plan.
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| 3. |
- Ekman, Karin, 1971, et al.
(författare)
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Agency and responsibility in smart air pollution monitoring.
- 2023
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Ingår i: Proceedings of the 8th International Conference on Smart and Sustainable Technologies (SpliTech), 21-23 June, 2023. Split-Bol, Croatia.. - : IEEE Publisher. - 9798350323207
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Konferensbidrag (refereegranskat)abstract
- In this paper, we use two cases to illustrate the role of citizens, researchers, and low-cost sensors for air quality monitoring in communal smart environments. In these settings, human-sensor collaborations might reconfigure relations between actors of Citizen Science and the political processes in the terms of roles, agency, and responsibilities. By looking at two cases run in Denmark and Norway, we strive to understand the roles played by citizens, researchers, and sensors in air quality monitoring, the responsibilities assigned to citizens and sensors in producing data about air pollution, and how the quality of the collected data was judged. The two cases show that low-cost sensors constitute an important driver for participation. By collecting data that can be used by local governments to derive relevant insights and informing action, citizens can be more actively involved in improving and maintaining the quality of their living environment. In both cases, we see the sensors as holding the potential to change the way citizens look at their living environments and facilitate data creation as a purposeful and meaningful social activity.
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| 4. |
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| 5. |
- Ekman, Karin, 1971, et al.
(författare)
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Behind the scenes of planning for public participation: planning for air-quality monitoring with low-cost sensors
- 2021
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Ingår i: Journal of Environmental Planning and Management. - : Informa UK Limited. - 0964-0568 .- 1360-0559. ; 64:5
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Tidskriftsartikel (refereegranskat)abstract
- We report from an environmental monitoring project planning for public participation to evaluate low-cost air pollution sensors. With an ethnographic approach, we studied how challenges were expressed and negotiated in discussions among project members when planning to involve the public in monitoring with low-cost sensors. Data was collected through participant observation of project meetings. Our analysis shows that perceived challenges involve data quality (i.e. reliability and validity), support, creating a sense of ownership and trust, as well as how to handle a possible rearrangement of power between authorities and the public. In order for the project to have control over different parts of the process when planning for public participation, they cannot stay true to all of the goals. This study contributes to the understanding of factors that foster the use of community-based data, and on the barriers for engaging the public in policy issues.
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| 6. |
- Ekman, Karin, 1971, et al.
(författare)
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Enabling interaction and engagement to pursue behaviour change in Citizen Science initiatives
- 2019
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Ingår i: CitSci2019.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Some Citizen Science (CS) initiatives wish to contribute to behavioural change, e.g. transformative lifestyle changes and community or civic action (Shirk et al., 2012; Phillips et al., 2018). At the same time, social media give individuals the opportunity to find others seeking the same common goals and to mobilize support or movement against injustices or for policy change as collective action. The collective action space model (Flannigan et al, 2006) focus on modes of interaction and engagement when describing how collective action is emerging and how it varies with new possibilities of engagement. Using personal interaction and entrepreneurial engagement to promote action, in this case as behavioural change, is well in line with the findings by e.g. Jordan et al. (2011) and Ballard and Belsky (2010). By applying contemporary CS frameworks on participation and outcomes combined with research on collective action, we examine how an environmental monitoring and internet-of-things project with public and private partners is reasoning about activities and potential behavioural outcomes. We used qualitative methods to study the planning of passive environmental sensing of particulate matter through citizen science practices. Data was collected through participant observation and transcripts of recorded meetings were analyzed using thematic analysis. Preliminary findings on participant activity in the associated social media community were also used. In this study, we demonstrate how project members reason about interactions, engagement and behavioural outcomes (as defined by Phillips et al., 2018)in the planning process. The project goals are to be a testbed for sensors and to contribute to better public health through informed decisions and changing everyday travel behaviours. We describe how the project is organizing for having a relationship with the participants through a written agreement to achieve desired outcomes and impacts. They talk about e.g. data quality, protocols and are also preparing for participants acting in their community on elevated levels of particulate matter. The activities and outputs of the project are strictly technical and do not promote behavioural change. Still, the use of a social media community could open up for participants to interact and engage further, but we found that the participants only engaged in line with the activities promoted by the project (e.g organizing own workshops to build more sensors and engaging in peer support). Little to no evidence of transformative lifestyle changes or community or civic action was found. We discuss these findings in relation to contemporary frameworks by examining how the expected participant interactions and engagement align with the behavioural outcomes discussed when planning the project. Since participants do not seem to act outside of what is afforded them by the project, we argue that the activities designed by projects need to promote behavioural change in order for the participants to take positive action accordingly (other than protocol activities or the like). We suggest that there is a need to define and elaborate on expected participant interactions and engagement in the careful planning and monitoring of behavioural outcomes in order to enhance the possibilities to reach them.
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| 7. |
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| 8. |
- Ekman, Karin, 1971
(författare)
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INFORMAL LEARNING IN AN ONLINE CITIZEN SCIENCE COMMUNITY
- 2019
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Ingår i: 11th International Conference on Education and New Learning Technologies (EDULEARN). Palma, Spain, July 1-3, 2019. - : IATED. - 2340-1117. - 9788409120314
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Konferensbidrag (refereegranskat)abstract
- The engagement of volunteers to participate in scientific and monitoring activities have become increasingly popular. In Citizen Science, volunteers are contributing to the scientific or monitoring processes by assisting with observations and classifications, or by creating data to e.g. monitor species or air quality. Volunteers are gathered in citizen science initiatives to engage in the science in society (as e.g. stakeholders in policy issues), or for civic mobilization to take action against e.g. environmental issues in collaboration with others. The Citizen Science initiatives that are engaging the public in the science of society and the civic engagement are well in line with the thoughts on scientific citizenship that Irwing (1995) described, with a more dialectic relationship between (and within) science and society. We have studied the community of a Citizen Science initiative that uses Passive sensing, where participants are collecting data particulate matter (PM 2,5 and PM 10) from small digital monitors for automatic sensing that are placed e.g. in their back yards. Even though the activities and outputs of the Citizen Science initiative are strictly technical, and do not promote civic engagement, the use of a social media community could open up for participants to interact and engage further. Our aim is to explore if participation in a Citizen Science initiative will generate further activities. We are interested in if their engagement in passive sensing of particulate matter will lead to e.g. civic engagement or engagement in the science of society. To do this, we used qualitative methods to study the participants of a citizen science initiative with a social media community. Data is collected through surveys, interviews and participant observation in the social media community. Preliminary findings on participant activity in the associated social media community will show how and in what topics the participants interact and engage in the social media community of the Citizen Science initiative. We will also show how they interact with the data from the sensor. We found that the participants engaged in line with the activities promoted by the Citizen Science initiative and the practice of the community. They are e.g. organizing own workshops to build more sensors, engaging in peer support and in e.g. out of the ordinary data. Little to no evidence of civic action was found, but there is evidence of engagement in the science of society. We discuss these findings in relation to contemporary research on public understanding of science and public engagement in science. We also discuss how (and if) the participants are developing the agency to act when engaged in place-based activities and the social and/or political mobilization that could emerge from this participation.
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| 9. |
- Ekman, Karin, 1971
(författare)
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Making sense of sensing: Learning through Maker-based Civic Engagement
- 2022
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- In the last decade or two, initiatives engaging the public in scientific activities have become increasingly popular. For example, in air pollution monitoring with Do-it-Yourself (DIY) low-cost sensors. It is a relatively new practice that emerged due to the falling costs of sensor technology and components, combined with enhanced access to communities for sharing information and support. The engagement in DIY monitoring is here described as a maker-based civic engagement where collective action towards civic goals is reached through a peer-based, interactive, and social practice adopted from the culture of the maker movement. Through a multi-sited ethnography this dissertation contributes with two perspectives on DIY monitoring; how an institutionally organized initiative perceives outcomes of public engagement and how a grassroot civic mobilization initiative acts and learns while DIY monitoring. The sites cover two approaches to involve people: top-down as an institutionally organised public engagement and bottom-up as a grassroot-driven civic engagement. To unpack the creation and sharing of meaning in this empirical setting, I draw on research on productive and exploratory dialogue, combined with research on online communities where people collectively engage in meaningful participation. The institutionally organized initiative plans for public participation and wants to influence people. However, they prioritize getting sensors up and running since not knowing how to address issues of empowerment. The members of the grassroot initiative do not engage in building common community knowledge around issues of air pollution the way the institutionally organised project wants. Instead, their civic and collective actions are intended to generate hyperlocal, open, real-time air pollution data and ensure that data will continue to be delivered. The maker-based civic engagement seen in this dissertation enables a specific form of interest-driven learning. The maker-based social media setting allows meaningful participation where members make sense of sensing through exploratory dialogues and scaffolding common community knowledge. This dissertation suggests that establishing social relationships through non-productive and purely social conversations may be of substantial value for the meaning that participants ascribe to participation in a community.
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| 10. |
- Ekman, Karin, 1971
(författare)
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Making sense of sensing: Scaffolding community knowledge in an online informal scientific engagement
- 2021
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Ingår i: Learning, Culture and Social Interaction. - : Elsevier BV. - 2210-6561 .- 2210-657X. ; 30:Part A
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Tidskriftsartikel (refereegranskat)abstract
- In the relatively understudied area of online informal scientific engagements, this paper aims to unpack the process of creating and sharing knowledge and understanding through dialogue. This is done through online ethnography in an initiative where members with their own air pollution monitors are discussing matters of air pollution, monitoring, data, and technical issues in a public Facebook group. By analysing a sample of text-based dialogue through the framework of exploratory talk, this paper addresses how knowledge and changes of understanding are negotiated, and situated, through social interaction within the community. The findings provide detailed and empirical insights into the ways in which the members of this informal online scientific community create and share meaning through social interaction. The use of low-cost sensors, active participation in the Facebook group, and a shared interest in understanding their own air pollution data are here shown to mediate further engagement and informal learning. Through social interaction and by sharing resources, members are enabled to engage in productive dialogue where common knowledge is created and scaffolded in the community over time. By unpacking the content and context dependent aspects of dialogue, this paper argues for the importance of meaningful participation for productive dialogues.
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