Digital body knowledge: A research project

Wir sind eines von besagten sechs Teilprojekten. #sfb1472

Madeleine Akrich shows in “From Communities of Practice to Epistemic Communities” (2010) how (online) health groups become epistemic communities that produce their own knowledge. This shifts the view of lay expertise from application to production.

doi.org/10.5153/sro.2152

#layexpertise

The nature of the Net: constructing reliability of health information on the Web This article juxtaposes the history of the book to the current discussions about lay health information on the Internet in order to thoroughly open up the notion of “reliability” that underlies these ...

In “The nature of the Net” (2004), Samantha Adams & Marc Berg reframe the problem of extension: as lay expertise spreads online, the issue becomes one of reliability – a quality made, not given.

doi.org/10.1108/09593840410542484

#layexpertise

We had a fantastic workshop today with Kate Weiner, Lisa Gerzen & @enricomariapiras.bsky.social! In our Data Sprint, we explored forums where people with obesity, sleep apnoea & ME/CFS discuss tracking devices and (digital) health data. Supported by @sfb1472.uni-siegen.de & funded by @dfg.de.

Harry Collins & Robert Evans argue in "The Third Wave of Science Studies" (2002) that dissolving boundaries between experts & publics risks an unlimited "problem of extension." Their solution: distinguishing interactive from contributory expertise.

doi.org/10.1177/0306...

#layexpertise

“May the Sheep Safely Graze?” (1998) by Brian Wynne probes the expert-lay divide, showing how local knowledges – like farmers’ insights on soil & sheep – are sidelined. He reframes science as cultural practice that stabilises authority, not universal truth.

doi.org/10.4135/9781...

#layexpertise

The Oxford Handbook of Expertise and Democratic Politics Abstract. This volume brings together investigations from social scientists, philosophers, and legal scholars into the political dimensions of expertise. I

In "The Meaning and Significance of Lay Expertise" (2023), Steven Epstein revisits the concept's development, addressing critiques & outlining key dimensions, highlighting lay expertise as a hybrid, collective fusion of experiential & formal knowledge.

doi.org/10.1093/oxfo...

#layexpertise

The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials - Steven Epstein, 1995 In an unusual instance of lay participation in biomedical research, U.S. AIDS treatment activists have constituted themselves as credible participants in the pr...

Steven Epstein shows in “The Construction of Lay Expertise” (1995) how AIDS activists in the 1980s strategically engaged with experts. A crucial factor was their appropriation of biomedical knowledge to gain credibility, reform trials & reshape biomedicine.

doi.org/10.1177/0162...

#layexpertise

The Oxford Handbook of Expertise and Democratic Politics Abstract. This volume brings together investigations from social scientists, philosophers, and legal scholars into the political dimensions of expertise. I

In “On the Multiplicity of Lay Expertise” (2023), Madeleine Akrich & Vololona Rabeharisoa show how patient associations practise evidence-based activism, articulating experiential & credentialed knowledge into expertise that reshapes health politics.

doi.org/10.1093/oxfo...

#layexpertise

“Most People with Long COVID Are Their Own Doctors” by @sazanajayadeva.bsky.social & @dalupton.bsky.social (2025) shows vividly how self-help and self-tracking turn patients into experts for themselves while problematising medical authority.

journals.sagepub.com/doi/10.1177/...

#layexpertise

After introducing this research project via our past publications, we now start an ongoing thread on a key concept in our work: lay expertise. In the weeks ahead, we’ll present classics and brand-new texts we consider central and relevant – and welcome your comments and suggestions! #layexpertise

Spending this very hot day while listening to very cool talks at the symposium "Therapeutic Encounters with Chatbots: The Social and Ethical Implications of Artificial Therapeutic Agents" (www.college-uaruhr.de/news-events/...), organised by @benjaminmarent.bsky.social and Sebastian Merkel. #sts

Last stop on our journey through the archive: In 2021, we explored how "the popular" has changed - from cultural distinction to measurable attention. The German version of the article we posted some weeks ago is available here (Open Access): doi.org/10.2478/kwg-2021-0027

#SFB1472

How have digital tools shaped medicine - from early expert systems to mobile tech? In Digitalisierung und Gesundheit, the anthology we introduced last week, we explore decades of change from a sociotechnical perspective (in German): www.nomos-elibrary.de/10.5771/9783...

#sfb1472 #digitalhealth

Digitalisierung und Gesundheit

Back to 2022 in our project introduction: What does digitalisation mean for healthcare? The volume "Digitalisierung und Gesundheit" (Digitalisation and Health, in German) explores AI, diagnostics, and care across disciplines: www.nomos-shop.de/de/p/digital...

#sfb1472 #digitalhealth

Moving further back in our project intro, this week we're sharing a report on the 2022 annual conference of Collaborative Research Centre 1472 "Transformations of the Popular", titled "Participation as Challenge".

Full text (in German): doi.org/10.28937/978...

#sfb1472

»Making Up Misophonic People« - Zeitschrift für Literaturwissenschaft und Linguistik Those affected by misophonia describe it as one of the first full-fledged diagnoses of the internet age. People who feel an insurmountable hatred of specific sounds gather in forums and on platforms. ...

Looking back at our research, this week’s spotlight is on misophonia, a diagnosis shaped online, where laypeople and experts co-create medical meaning. We illustrate how communities fight for recognition and define illness. Full text (in German): doi.org/10.1007/s412...

#sfb1472 #digitalhealth

New week, new post in our intro series: What does it mean to be popular today? This article traces how popularity shifted from cultural distinction to measurable attention – via charts, clicks & likes. Read more: www.mdpi.com/2076-0752/12...
#SFB1472 #OpenAccess

Expert*innen-Lai*innen-Kommunikation im institutionellen Wandel – Beispiele aus Medizin, Kommunalpolitik und Kirche - Zeitschrift für Literaturwissenschaft und Linguistik Zeitschrift für Literaturwissenschaft und Linguistik -

Next up in our intro series: How do laypeople and experts interact in shifting institutions like medicine, politics, and religion? This 2023 special issue maps the terrain of knowledge, power & participation. Full text (in German): doi.org/10.1007/s41244-023-00314-1

#SFB1472 #OpenAccess

Auch wir haben einen Beitrag zur neuen Ausgabe der POP beigesteuert: unsere Überlegungen zu Konvergenzen zwischen Lifestyle-Wearables und zertifizierten Medizinprodukten am Beispiel der Apple Watch, welche im Rahmen des @sfb1472.uni-siegen.de entstanden sind.

BEACHTUNG UND BEWERTUNG POPULÄRER KÖRPERDATEN Article BEACHTUNG UND BEWERTUNG POPULÄRER KÖRPERDATEN was published on April 1, 2023 in the journal POP. Kultur und Kritik (volume 12, issue 1).

On we go with our project intro and another throwback: In 2023, we explored how wearables like Fitbits generate “grey data” – private, yet popular health info. What makes it popular, what makes it tricky? Full text (in German): doi.org/10.14361/pop...

Patient‐Generated Data as Interventions in Doctor‐Patient Relationships? Negotiating (Un)Invited Participation in Medical Consultations Health data generated by apps and devices are increasingly popular and expected to affect various aspects of doctor-patient relationships. No longer confined to medically authorised and certified hea....

Continuing our journey backwards with our penultimate publication: This article explores how doctors respond to patient-generated health data from consumer devices. When do they reject, tolerate or integrate such data? Read more: doi.org/10.1111/1467...

Old data in new media? Problematic popularity of digital health data and consumer devices Digital health data and devices have become increasingly popular in contemporary consumer cultures. This resonates with research on the expansion of health data ecosystems and the rise of consumeri...

Hello Bluesky! Our research project has already been running for 4 years, but since we're new on this platform, we’d like to introduce ourselves. Over the coming weeks, we’ll share our findings—starting with our latest publication and working backward. Check it out: doi.org/10.1080/1369...

Our project is part of the Collaborative Research Centre (SFB) 1472 „Transformations of the Popular“, funded by the German Research Foundation (DFG). #DigitalHealth #eHealth #mHealth #MedicalAuthority #PatientGeneratedData [3/3]

Wearables, apps & platforms generate more & more body data, shaping how medical knowledge is produced & applied. In our project, 'Digital Body Knowledge. Fault Lines of Problematic Popularity in Health Care', we explore how these developments impact interactions between patients & doctors. [1/3]

We explore opportunities & conflicts arising when patients generate & present their own biomedical data. How do digitalisation & the popularisation of wearables & patient-generated data challenge medical authority? Do they create new ways of legitimising professional expertise? [2/3]