Digital Spaces and DIY Health: Infrastructures, Activism, and Networks

Datum
12. Sep­tem­ber 2025 

Work­shop at Queen Mary Uni­ver­si­ty of Lon­don, UK

Dig­i­tal Spaces and DIY Health: Infra­struc­tures, Activism, and Networks
Sep­tem­ber 12, 2025
Queen Mary Uni­ver­si­ty of London 

We seek abstracts for a work­shop at Queen Mary Uni­ver­si­ty of Lon­don on dig­i­tal health com­mu­ni­ties, infor­mal care path­ways, treat­ment activism, and con­test­ed illness. 

Dig­i­tal spaces pro­vide meet­ing places for peo­ple who are expe­ri­enc­ing symp­toms, man­ag­ing ill­ness­es, and/or seek­ing med­ica­tion through infor­mal routes. Lit­er­a­ture in this area has often con­cen­trat­ed on dig­i­tal com­mu­ni­ties that emerge around con­test­ed ill­ness­es because peo­ple expe­ri­enc­ing a con­test­ed ill­ness are like­ly to have been turned away by a doc­tor and resort to seek­ing infor­ma­tion and sup­port online. How­ev­er, dig­i­tal health com­mu­ni­ties also emerge around a wide vari­ety of groups whose med­ical needs are stig­ma­tized, whether that’s because of their sex­u­al­i­ty, gen­der iden­ti­ty, or con­tro­ver­sy around the treatment/medication they seek. These types of com­mu­ni­ties self-organ­ise in dig­i­tal spaces where they share expe­ri­ences, pro­vide sup­port, devel­op forms of exper­tise, advise each oth­er on pre­ferred med­ical providers, strate­gise for greater vis­i­bil­i­ty, and facil­i­tate each other’s access to phar­ma­ceu­ti­cals that they can­not or do not want to obtain through for­mal channels. 

We seek papers that address these types of dig­i­tal health com­mu­ni­ties, across the spec­trum of med­ical needs that they address and political/geographical con­texts where they reach. We espe­cial­ly seek papers that con­tribute to method­olog­i­cal con­ver­sa­tions around research­ing dig­i­tal health plat­forms which are fast evolv­ing and raise thorny ques­tions about the ethics of research in online spaces.

Poten­tial top­ics may include but are not lim­it­ed to: 

· Online forums and social media as spaces for infor­mal health support

· Infor­mal phar­ma­ceu­ti­cal net­works and online buy­ers’ clubs for HIV pre­ven­tion (e.g., PrEP, PEP, DoxyPEP)

· Self-man­aged repro­duc­tive health (fer­til­i­ty, con­tra­cep­tion, abortion) 

· Trans health care online spaces, espe­cial­ly those for DIY trans care 

· Dig­i­tal plat­forms sup­port­ing com­mu­ni­ties with con­test­ed or chron­ic ill­ness­es (e.g., long COVID, endometrio­sis, chron­ic Lyme)

· Bio­hack­ing inter­ven­tions (e.g. DIY insulin) 

· Activism and polit­i­cal mobil­i­sa­tion by dig­i­tal health communities

· Method­olog­i­cal inter­ven­tions for study­ing dig­i­tal DIY health

· The­o­ret­i­cal con­tri­bu­tions around self-man­aged health or infor­mal care networks 

We see con­tri­bu­tions from schol­ars across dis­ci­plines (and at any career stage), but this call might be most rel­e­vant to peo­ple in geog­ra­phy, soci­ol­o­gy, anthro­pol­o­gy, pub­lic health, STS, and gen­der stud­ies. We also wel­come papers from practitioners/ activists/ non-aca­d­e­mics. We aim to sub­mit a jour­nal spe­cial issue from the papers fol­low­ing the workshop.

If you’d like to par­tic­i­pate, please sub­mit your abstract (max 300 words) and a short biog­ra­phy to s.calkin@qmul.ac.uk and a.martinezlacabe@qmul.ac.uk by Fri­day June 13, 2025.