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

Date
Sep 19 , 2025 

Hybrid Con­fer­ence


Dig­i­tal Spaces and DIY Health: Infra­struc­tures, Activism, and Networks
Sep­tem­ber 12, 2025 (in per­son at QMUL)
With an online only com­pan­ion event on Sep­tem­ber 19, 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, and treat­ment activism. 

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 stig­ma­tised, 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 seek 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. 

We’ve been excit­ed by the ini­tial response to the work­shop and we’ve received inquiries from many over­seas col­leagues who can­not attend an in per­son event in Lon­don. We pre­fer to main­tain an in per­son event in Lon­don, with­out hybrid par­tic­i­pa­tion. Instead, we’ve decid­ed to add a com­pan­ion event one week lat­er, online only, to invite addi­tion­al over­seas con­trib­u­tors. The online event will begin at 1pm UK time and run dur­ing the after­noon to accom­mo­date as many dif­fer­ent time zones as pos­si­ble. Par­tic­i­pants at the Lon­don event (Sep­tem­ber 12) are invit­ed to attend the online event as well (Sep­tem­ber 19). 

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. When you send your abstract, please indi­cate whether you want to be con­sid­ered for the in-per­son event in Lon­don (Sep­tem­ber 12) or the online-only event (Sep­tem­ber 19)