Pub Date : 2022-04-22DOI: 10.1057/s41292-022-00278-4
Bianca Jansky, Henriette Langstrup
The #WeAreNotWaiting movement is a global digital health phenomenon in which people with diabetes, mainly type 1 diabetes (T1D), engage in the development and usage of open-source closed-loop technology for the improvement of their "chronic living" (Wahlberg et al. 2021). The characteristics of a digitally enabled and technologically engaged global activist patient collective feed into existing narratives of user-led and open-source innovation. They also call for more exploration of what it actually means to be locally involved in this kind of technologically mediated and global form of patient engagement. Building on empirical research conducted in the German healthcare context, we explore the different forms of material participation encountered among a group of people with T1D (who describe themselves as loopers), who are engaged in the development and usage of this open-source technology. Introducing the concept of device activism, we retrace three different device-centered narratives that show how a globally shared concern and political participation through technology use varies with local practices. Hereby we stress that the engagement in the #WeAreNotWaiting movement is both shaped by and is shaping the matters of concerns: devices in, on, and with bodies.
{"title":"Device activism and material participation in healthcare: retracing forms of engagement in the #WeAreNotWaiting movement for open-source closed-loop systems in type 1 diabetes self-care.","authors":"Bianca Jansky, Henriette Langstrup","doi":"10.1057/s41292-022-00278-4","DOIUrl":"10.1057/s41292-022-00278-4","url":null,"abstract":"<p><p>The #WeAreNotWaiting movement is a global digital health phenomenon in which people with diabetes, mainly type 1 diabetes (T1D), engage in the development and usage of open-source closed-loop technology for the improvement of their \"chronic living\" (Wahlberg et al. 2021). The characteristics of a digitally enabled and technologically engaged global activist patient collective feed into existing narratives of user-led and open-source innovation. They also call for more exploration of what it actually means to be locally involved in this kind of technologically mediated and global form of patient engagement. Building on empirical research conducted in the German healthcare context, we explore the different forms of material participation encountered among a group of people with T1D (who describe themselves as loopers), who are engaged in the development and usage of this open-source technology. Introducing the concept of device activism, we retrace three different device-centered narratives that show how a globally shared concern and political participation through technology use varies with local practices. Hereby we stress that the engagement in the #WeAreNotWaiting movement is both shaped by and is shaping the matters of concerns: devices in, on, and with bodies.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":" ","pages":"1-25"},"PeriodicalIF":1.6,"publicationDate":"2022-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9024066/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10621514","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-04-16DOI: 10.1057/s41292-022-00280-w
A. Filipe
{"title":"Correction to: The other face of medical globalization? Pharmaceutical data, prescribing trends, and the social localization of psychostimulants","authors":"A. Filipe","doi":"10.1057/s41292-022-00280-w","DOIUrl":"https://doi.org/10.1057/s41292-022-00280-w","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"18 1","pages":"358 - 358"},"PeriodicalIF":1.6,"publicationDate":"2022-04-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42969974","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-04-12DOI: 10.1057/s41292-022-00276-6
Amelia Fiske, Alexander Degelsegger-Márquez, Brigitte Marsteurer, Barbara Prainsack
It has become a trope to speak of the increasing value of health data in our societies. Such rhetoric is highly performative: it creates expectations, channels and justifies investments in data technologies and infrastructures, and portrays deliberations on political and legal issues as obstacles to the flow of data. Yet, important epistemic and political questions remain unexamined, such as how the value of data is created, what data journeys are envisioned by policies and regulation, and for whom data types are (intended to be) valuable. Drawing on two empirical cases, (a) interviews with physicians on the topic of digital selfcare, and (b) expectations of stakeholders on the use of Real-World Data in clinical trials, as well as existing literature, we propose a typology of what health data help us to do. This typology is intended to foster reflection about the different roles and values that data use unfolds. We conclude by discussing how regulation can better accommodate practices of valuation in the health data domain, with a particular focus on identifying regulatory challenges and opportunities for EU-level policy makers, and how Covid-19 has shed light on new aspects of each case.
{"title":"Value-creation in the health data domain: a typology of what health data help us do.","authors":"Amelia Fiske, Alexander Degelsegger-Márquez, Brigitte Marsteurer, Barbara Prainsack","doi":"10.1057/s41292-022-00276-6","DOIUrl":"10.1057/s41292-022-00276-6","url":null,"abstract":"<p><p>It has become a trope to speak of the increasing value of health data in our societies. Such rhetoric is highly performative: it creates expectations, channels and justifies investments in data technologies and infrastructures, and portrays deliberations on political and legal issues as obstacles to the flow of data. Yet, important epistemic and political questions remain unexamined, such as how the value of data is created, what data journeys are envisioned by policies and regulation, and for whom data types are (intended to be) valuable. Drawing on two empirical cases, (a) interviews with physicians on the topic of digital selfcare, and (b) expectations of stakeholders on the use of Real-World Data in clinical trials, as well as existing literature, we propose a typology of what health data help us to do. This typology is intended to foster reflection about the different roles and values that data use unfolds. We conclude by discussing how regulation can better accommodate practices of valuation in the health data domain, with a particular focus on identifying regulatory challenges and opportunities for EU-level policy makers, and how Covid-19 has shed light on new aspects of each case.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"1 1","pages":"1-25"},"PeriodicalIF":1.6,"publicationDate":"2022-04-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9002030/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45130289","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-04-10DOI: 10.1057/s41292-022-00279-3
C. Horn
{"title":"Ectogenesis, inequality, and coercion: a reproductive justice-informed analysis of the impact of artificial wombs","authors":"C. Horn","doi":"10.1057/s41292-022-00279-3","DOIUrl":"https://doi.org/10.1057/s41292-022-00279-3","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"18 1","pages":"523 - 544"},"PeriodicalIF":1.6,"publicationDate":"2022-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42726525","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-04-05DOI: 10.1057/s41292-022-00277-5
M. Davis, A. Schermuly, Anthony K. J. Smith, Christy E. Newman
{"title":"Diversity via datafication? Digital patient records and citizenship for sexuality and gender diverse people","authors":"M. Davis, A. Schermuly, Anthony K. J. Smith, Christy E. Newman","doi":"10.1057/s41292-022-00277-5","DOIUrl":"https://doi.org/10.1057/s41292-022-00277-5","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"18 1","pages":"451-472"},"PeriodicalIF":1.6,"publicationDate":"2022-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43787434","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-04-04DOI: 10.1057/s41292-021-00265-1
Caitlin M. Macmillan
{"title":"Openness in donor conception families","authors":"Caitlin M. Macmillan","doi":"10.1057/s41292-021-00265-1","DOIUrl":"https://doi.org/10.1057/s41292-021-00265-1","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":" ","pages":""},"PeriodicalIF":1.6,"publicationDate":"2022-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47089836","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-03-11DOI: 10.1057/s41292-022-00273-9
Poyao Huang
{"title":"Sexual health as surplus: the marketization of PrEP in Taiwan","authors":"Poyao Huang","doi":"10.1057/s41292-022-00273-9","DOIUrl":"https://doi.org/10.1057/s41292-022-00273-9","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"18 1","pages":"410-428"},"PeriodicalIF":1.6,"publicationDate":"2022-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48515973","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-03-08DOI: 10.1057/s41292-022-00271-x
A. Filipe
{"title":"The other face of medical globalization? Pharmaceutical data, prescribing trends, and the social localization of psychostimulants","authors":"A. Filipe","doi":"10.1057/s41292-022-00271-x","DOIUrl":"https://doi.org/10.1057/s41292-022-00271-x","url":null,"abstract":"","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"1 1","pages":"1-23"},"PeriodicalIF":1.6,"publicationDate":"2022-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42194161","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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