Cultures, Communities and Connections in the HIV Sector: Linking Academics, HIV Advocates/Activists, Clinicians, and the Digital Humanities

Lead Research Organisation: Keele University
Department Name: Faculty of Humanities & Social Sciences

Abstract

When it first emerged in the early 1980s, HIV/AIDS was primarily located in the USA's gay male communities. Now, HIV/AIDS is a truly global pandemic, spread across a wide range of ethnic, gender, age, and sexual groups. Moreover, effective medications introduced in 1995 changed HIV from a typically fatal condition to a 'manageable' one. These developments mean that we can no longer speak of 'the HIV community'. Instead, across the globe, there are people living with HIV (PLWH), along with medical practitioners and health agencies; local, national and international health and governmental organisations; and HIV activists/advocates, who form communities of varying sizes and complexities and which, together, make up an HIV sector. This complexity shapes this sector's attempts to connect these communities whilst maintaining their distinctive cultures and voices. Connecting diverse communities is, thus, the active goal of a complex set of groups and organisations concerned with HIV/AIDS. Yet scholarship exploring the cultures, communities and connections within today's HIV sector is virtually non-existent. To fill this gap, we plan to bring together scholars, clinicians, and HIV activists/advocates, some of whom live with HIV, to better understand:

How these different responses come together to create a global 'health community'; what makes up the HIV sector; how these different communities, professions and organisations interrelate, and how these connections and relationships impact on HIV-affected communities; and what it means to be a PLWH living in a particular community and/or spanning different ones.

To explore these questions, we will also consider how the HIV sector changed in response to the emergence of new medications and new populations infected by the virus. Understanding these changes could increase our knowledge of the impact of disease distribution and scientific developments on other communities linked by a particular health condition.

Our aims and objectives are to:

Enable a range of actors working in the HIV sector and in academia arenas to connect with each other so that they can conduct better research into the HIV sector and into specific health sectors more generally.

Better understand how different communities, connected by a single health crisis, relate to and connect to one another.

Consider how connecting communities may benefit the HIV sector, and indeed any communities affected by health or other crises.

Proposed Activities: Across the course of 18 months, we will hold 5 seminars, at which national and international scholars will present their research, and produce a series of academic papers based on the seminars. Including academics and people working in the HIV sector in writing these articles will be a key goal. At the project's end, the network will present its main findings to HIV community groups. We will also build a network-dedicated website, and post our main findings, a downloadable community report and, when possible, power points of seminar presentations. The core members, drawn from a range of HIV specialists (academics, clinicians, and activists/advocates), humanities and digital humanities scholars, and academics specialising in health and health experiences, will attend and sometimes lead the seminars, discuss the presentations, and help with making the network's findings available to the wider academic and HIV communities. Our 5 proposed seminars will explore inter/connecting communities and narratives in the HIV sector; communities connecting by commemorating those lost to HIV/AID and/or by using the internet and other digital media; and the role of HIV clinicians and activist in connecting HIV communities. Seminars will be hosted at Keele and at Salford universities, and in central London, and presentations given by UK-based and international scholars and HIV activists/advocates.

Planned Impact

As detailed in the attached 'Pathways to Impact', this network will have a range of benefits for the full spectrum of actors and agencies participating in the network itself and for the communities they broadly represent. As a result of our concerted efforts to include an array of stakeholders invested in the HIV sector, the network will engage those working within the academic, HIV, digital humanities, and clinical sectors. Thus groups impacted by the network include people living with HIV (PLWH); medical practitioners/health agencies; local, national and international health and governmental agencies; HIV activists/advocates; and academics.

While the disciplinary focus of the proposed network remains that of the humanities (here, history, cultural studies, and the digital humanities), the proposal crosses disciplinary boundaries by including social scientists and clinicians in its core group and its stable of speakers. This, then, is the first impact we identify here: in addition to increasing connectedness regarding HIV and communities research on a substantive level, the network will enrich the inter-disciplinarity of academic discourse regarding HIV and/or community connections within the academic sector. This enrichment will, we believe, be deepened by the fact that several international academics will contribute to the seminars. (It is noteworthy than those national and international academics whose contribution we have secured, should this proposal be accepted, have all described their enthusiasm for an opportunity to collaborate with other academics working in the area of HIV, as they feel that they have been working in unconnected and disparate settings and areas, and that this disconnection weakens their own work).

The proposed network will also enhance cross-sector engagement - here, between the research and the stakeholder communities by, again, including HIV activists/advocates and people living with HIV (PLWH), and members of the clinical communities, in the core group and the list of seminar presenters/attendees. Given the increasingly social nature of living with HIV given medical and technological developments, these connections will be of particular use to those working in clinical fields.

For all of those engaging with the network, either directly, or through the website, these engagements will
expand their personal and/or professional networks, and provide participants and other beneficiaries with access to state-of-the-art thinking about HIV communities, which can be used to influence policy and practice, and opportunities for engagement with follow-on HIV community development projects, both within their existing fields (e.g. academia, service delivery) and/or through new cross-sector collaborations to be developed over time and with the help of these network-provided connections. The inclusion of members of HIV communities, particularly of PLWH, is of critical importance for shaping a research agenda that is responsive to the realities and needs of these communities, unlike much research that has been experienced by HIV communities and PLWH as disconnected from them. We would hope that this inclusiveness at all levels (planning, presentation, writing and dissemination, and the like) will set a precedent for future research into and, more importantly, with PLWH and their representatives.

Finally, we expect our findings to impact HIV communities themselves, both through direct engagement with the network and through dissemination of our findings more widely (e.g. the website, but particularly through our end-of-project presentations to HIV communities in London and Manchester). The findings, of direct relevance to those working in the HIV sector and to PLWH themselves, may be used to inform HIV communities' own actions and policies in the interests of furthering and deepening connections within the HIV sector (e.g. between and across HIV communities).

Publications

10 25 50
 
Description The HIV sector is riven by internal tensions that emerged since 1996, with the advent of life-saving anti-retrovirals, and thereafter. Thus the term 'HIV communities' is difficult to justify within an increasingly complex, diverse, medicalised, and globalised sector. For example, as Chris Desmond discussed, 'Tighter resource constraints highlight differences and tensions within the HIV and AIDS sector. Some communities and their representatives advocate for particular populations, others for interventions, and still others for certain aspects of populations or interventions. Of particular interest, and arguably concern, is the push from the medical minded to move back to what they view as 'basics' in HIV care and support. These members of the HIV sector may have been prepared to entertain a multisectoral response before treatment was available, and, once treatment became available, while the money was flowing. But with a tightening of financial constraints, they are not so tolerant'. Desmond argued that arguments for targeting specific populations for treatment and interventions over others is based on 'the pseudo-economics used to present it as science', and has as-yet unknown implications for 'relations between HIV communities, how the sector evaluates the legitimacy of claims to community representation, and the likelihood of connections across communities affected by HIV'.

Other findings are that the cultural representation of HIV/AIDS has shifted since the epidemic's height - as Richard Canning discussed, 'since the advent of combination therapy treatments rolled out in the West from 2006-7 onwards, HIV/AIDS has rapidly become both historicised and - evidently - also either hard or difficult to recall, conceptualise, literalise, and sometimes even to identify or name'.

Other findings centred on the increasing internationalization of the response to HIV/AIDS, with western organizations and interventions changing how HIV/AIDS is organised and experienced in e.g. the African context. Drawing on his ethnographic research in a South Sudanese refugee camp with a significant number of people living with HIV, Dr. Hakan Seckinelgin showed that a specific 'policy intervention, made alongside the changing concerns of 'communities of everyday life', produces and reproduces distinctive communities, rather than simply respond to them' - thus policy responses change community contexts and the everyday lives and identities that operate with them. Dr Mandisa Mbali documented the impacts on national AIDS responses - here, South African - of western (here, American) AIDS activism shaped local and global HIV/AIDS politics and cultures. In this instance, American AIDS activists engaged in transnational AIDS activism, and 'this transnational activist-physician collaboration around South African treatment literacy programs had two major impacts on the politics of global health. Firstly, they constituted part of the moral authority the TAC [Treatment Action Campaign] wielded in its effective advocacy for treatment access. Secondly, the programs were emulated by activists abroad'.

Finally, commemorating the history of the HIV community and of lives lost to the epidemic is a challenging project. Although the AIDS quilt is well-known, there is no enduring monument to people who died of AIDS (there is no permanent housing for the quilt), and ACTUP has become the symbol of the history of AIDS activism, which, as Dr. Erin J. Rand suggested, mythologizes 'The passion and rebellion apparent in the philosophy and practice of ACT UP', constraining future activist work. Moreover, Dr. Monica Pearl suggested that because 'Sustained loss (melancholia) is constitutive of communities', the absence/diminution of mourning AIDS deaths over time has erased an important aspect of the HIV/AIDS community.
Exploitation Route Findings might be taken forward in multiple ways, but these reflections have particular resonance for those charged with making health policy, governing health spending, historians and other scholars investigating culture, medicine, and social movements and, not least, those concerned to remember the HIV epidemic in all its phases (including the earliest, for which there are now many fewer witnesses).
Sectors Communities and Social Services/Policy,Healthcare,Culture, Heritage, Museums and Collections

 
Description HIV and death/dying 
Organisation Chelsea and Westminster Hospital
Country United Kingdom 
Sector Hospitals 
PI Contribution Rosenfeld is working with others connected to the seminar series in drafting a proposal for funding to investigate HIV, death and dying in historical context
Collaborator Contribution drafting a proposal for funding to investigate HIV, death and dying in historical context
Impact Draft proposal to be submitted to the ESRC or to Wellcome
Start Year 2015
 
Description HIV and death/dying 
Organisation University of New South Wales
Department Sociology & Anthropology
PI Contribution Rosenfeld is working with others connected to the seminar series in drafting a proposal for funding to investigate HIV, death and dying in historical context
Collaborator Contribution drafting a proposal for funding to investigate HIV, death and dying in historical context
Impact Draft proposal to be submitted to the ESRC or to Wellcome
Start Year 2015
 
Description HIV and death/dying 
Organisation University of Westminster
Department Psychology
Country United Kingdom 
Sector Academic/University 
PI Contribution Rosenfeld is working with others connected to the seminar series in drafting a proposal for funding to investigate HIV, death and dying in historical context
Collaborator Contribution drafting a proposal for funding to investigate HIV, death and dying in historical context
Impact Draft proposal to be submitted to the ESRC or to Wellcome
Start Year 2015
 
Description HIV and long-term care 
Organisation George House Trust
PI Contribution Several individuals associated with this project, some of whom presented at seminars, and all of whom attended seminars, contributed their clinical (Jane Anderson), research (Rosenfeld, Damien Ridge, Diane Pitt, Mo Ray) and HIV sector (Yusef Azad, National AIDS Trust; Silvia Petrettir, Positively UK; Steve Earle, Sahir House; and Colin Armstead, George House Trust) contributed to crafting a proposal for a significant funding bid to explore HIV and long-term Care in the UK.
Collaborator Contribution These Partners added their suggestions for recruitment, key research questions, and engaging the HIV sector and people living with HIv in the research, as well as how to best disseminate the findings.
Impact Funding proposals to Abbeyfield Trust and Wellcome
Start Year 2014
 
Description HIV and long-term care 
Organisation Homerton University Hospital NHS Foundation Trust
Country United Kingdom 
Sector Public 
PI Contribution Several individuals associated with this project, some of whom presented at seminars, and all of whom attended seminars, contributed their clinical (Jane Anderson), research (Rosenfeld, Damien Ridge, Diane Pitt, Mo Ray) and HIV sector (Yusef Azad, National AIDS Trust; Silvia Petrettir, Positively UK; Steve Earle, Sahir House; and Colin Armstead, George House Trust) contributed to crafting a proposal for a significant funding bid to explore HIV and long-term Care in the UK.
Collaborator Contribution These Partners added their suggestions for recruitment, key research questions, and engaging the HIV sector and people living with HIv in the research, as well as how to best disseminate the findings.
Impact Funding proposals to Abbeyfield Trust and Wellcome
Start Year 2014
 
Description HIV and long-term care 
Organisation Sahir House
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Several individuals associated with this project, some of whom presented at seminars, and all of whom attended seminars, contributed their clinical (Jane Anderson), research (Rosenfeld, Damien Ridge, Diane Pitt, Mo Ray) and HIV sector (Yusef Azad, National AIDS Trust; Silvia Petrettir, Positively UK; Steve Earle, Sahir House; and Colin Armstead, George House Trust) contributed to crafting a proposal for a significant funding bid to explore HIV and long-term Care in the UK.
Collaborator Contribution These Partners added their suggestions for recruitment, key research questions, and engaging the HIV sector and people living with HIv in the research, as well as how to best disseminate the findings.
Impact Funding proposals to Abbeyfield Trust and Wellcome
Start Year 2014
 
Description HIV and long-term care 
Organisation University of Lincoln
Country United Kingdom 
Sector Academic/University 
PI Contribution Several individuals associated with this project, some of whom presented at seminars, and all of whom attended seminars, contributed their clinical (Jane Anderson), research (Rosenfeld, Damien Ridge, Diane Pitt, Mo Ray) and HIV sector (Yusef Azad, National AIDS Trust; Silvia Petrettir, Positively UK; Steve Earle, Sahir House; and Colin Armstead, George House Trust) contributed to crafting a proposal for a significant funding bid to explore HIV and long-term Care in the UK.
Collaborator Contribution These Partners added their suggestions for recruitment, key research questions, and engaging the HIV sector and people living with HIv in the research, as well as how to best disseminate the findings.
Impact Funding proposals to Abbeyfield Trust and Wellcome
Start Year 2014
 
Description HIV and long-term care 
Organisation University of Westminster
Department Psychology
Country United Kingdom 
Sector Academic/University 
PI Contribution Several individuals associated with this project, some of whom presented at seminars, and all of whom attended seminars, contributed their clinical (Jane Anderson), research (Rosenfeld, Damien Ridge, Diane Pitt, Mo Ray) and HIV sector (Yusef Azad, National AIDS Trust; Silvia Petrettir, Positively UK; Steve Earle, Sahir House; and Colin Armstead, George House Trust) contributed to crafting a proposal for a significant funding bid to explore HIV and long-term Care in the UK.
Collaborator Contribution These Partners added their suggestions for recruitment, key research questions, and engaging the HIV sector and people living with HIv in the research, as well as how to best disseminate the findings.
Impact Funding proposals to Abbeyfield Trust and Wellcome
Start Year 2014
 
Description Sexual technologies 
Organisation Birkbeck, University of London
Department Department of History, Classics and Archaeology
PI Contribution Dr. Dana Rosenfeld led on drafting the proposal, drawing on connections with the HIV sector.
Collaborator Contribution six collaborators - Dr. Sharif Mowlabocus (University of Sussex), Dr. Manon Parry (University of Amsterdam), Professor Matt Cook (Birkbeck, University of London), Ms. Silvia Petretti (Positively UK), Dr. Ann Moore (Guttmacher Institute), and Mrs. Jackie Morton (European AIDS Treatment Group) - contributed to producing a proposal entitled Sexual/ised Technologies, Morality, and Health, submitted to the Wellcome Trust Seed Awards in Humanities and Social Science stream in 2017 (unsuccessful). Dr Mowlabocus, who presented at our funded seminar series, contributed expertise on digital technologies and gay male sexual relations, Dr Parry on reproductive technologies, and Professor Cook on sexual technologies as they relate to HIV. Ms Petretti and Ms Morton provided into into women and sexual technology, esepcially as related to HIV and reproduction, and they and Dr Moore provided input into policy dimensions of the project.
Impact Proposal for funding, which we will revisit and rework for submission to another funding body.
Start Year 2016
 
Description Sexual technologies 
Organisation European AIDS Treatment Group (EATG)
Country European Union (EU) 
Sector Public 
PI Contribution Dr. Dana Rosenfeld led on drafting the proposal, drawing on connections with the HIV sector.
Collaborator Contribution six collaborators - Dr. Sharif Mowlabocus (University of Sussex), Dr. Manon Parry (University of Amsterdam), Professor Matt Cook (Birkbeck, University of London), Ms. Silvia Petretti (Positively UK), Dr. Ann Moore (Guttmacher Institute), and Mrs. Jackie Morton (European AIDS Treatment Group) - contributed to producing a proposal entitled Sexual/ised Technologies, Morality, and Health, submitted to the Wellcome Trust Seed Awards in Humanities and Social Science stream in 2017 (unsuccessful). Dr Mowlabocus, who presented at our funded seminar series, contributed expertise on digital technologies and gay male sexual relations, Dr Parry on reproductive technologies, and Professor Cook on sexual technologies as they relate to HIV. Ms Petretti and Ms Morton provided into into women and sexual technology, esepcially as related to HIV and reproduction, and they and Dr Moore provided input into policy dimensions of the project.
Impact Proposal for funding, which we will revisit and rework for submission to another funding body.
Start Year 2016
 
Description Sexual technologies 
Organisation Guttmacher Institute
Country United States 
Sector Charity/Non Profit 
PI Contribution Dr. Dana Rosenfeld led on drafting the proposal, drawing on connections with the HIV sector.
Collaborator Contribution six collaborators - Dr. Sharif Mowlabocus (University of Sussex), Dr. Manon Parry (University of Amsterdam), Professor Matt Cook (Birkbeck, University of London), Ms. Silvia Petretti (Positively UK), Dr. Ann Moore (Guttmacher Institute), and Mrs. Jackie Morton (European AIDS Treatment Group) - contributed to producing a proposal entitled Sexual/ised Technologies, Morality, and Health, submitted to the Wellcome Trust Seed Awards in Humanities and Social Science stream in 2017 (unsuccessful). Dr Mowlabocus, who presented at our funded seminar series, contributed expertise on digital technologies and gay male sexual relations, Dr Parry on reproductive technologies, and Professor Cook on sexual technologies as they relate to HIV. Ms Petretti and Ms Morton provided into into women and sexual technology, esepcially as related to HIV and reproduction, and they and Dr Moore provided input into policy dimensions of the project.
Impact Proposal for funding, which we will revisit and rework for submission to another funding body.
Start Year 2016
 
Description Sexual technologies 
Organisation Positively UK
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Dr. Dana Rosenfeld led on drafting the proposal, drawing on connections with the HIV sector.
Collaborator Contribution six collaborators - Dr. Sharif Mowlabocus (University of Sussex), Dr. Manon Parry (University of Amsterdam), Professor Matt Cook (Birkbeck, University of London), Ms. Silvia Petretti (Positively UK), Dr. Ann Moore (Guttmacher Institute), and Mrs. Jackie Morton (European AIDS Treatment Group) - contributed to producing a proposal entitled Sexual/ised Technologies, Morality, and Health, submitted to the Wellcome Trust Seed Awards in Humanities and Social Science stream in 2017 (unsuccessful). Dr Mowlabocus, who presented at our funded seminar series, contributed expertise on digital technologies and gay male sexual relations, Dr Parry on reproductive technologies, and Professor Cook on sexual technologies as they relate to HIV. Ms Petretti and Ms Morton provided into into women and sexual technology, esepcially as related to HIV and reproduction, and they and Dr Moore provided input into policy dimensions of the project.
Impact Proposal for funding, which we will revisit and rework for submission to another funding body.
Start Year 2016
 
Description Sexual technologies 
Organisation University of Amsterdam
Country Netherlands 
Sector Academic/University 
PI Contribution Dr. Dana Rosenfeld led on drafting the proposal, drawing on connections with the HIV sector.
Collaborator Contribution six collaborators - Dr. Sharif Mowlabocus (University of Sussex), Dr. Manon Parry (University of Amsterdam), Professor Matt Cook (Birkbeck, University of London), Ms. Silvia Petretti (Positively UK), Dr. Ann Moore (Guttmacher Institute), and Mrs. Jackie Morton (European AIDS Treatment Group) - contributed to producing a proposal entitled Sexual/ised Technologies, Morality, and Health, submitted to the Wellcome Trust Seed Awards in Humanities and Social Science stream in 2017 (unsuccessful). Dr Mowlabocus, who presented at our funded seminar series, contributed expertise on digital technologies and gay male sexual relations, Dr Parry on reproductive technologies, and Professor Cook on sexual technologies as they relate to HIV. Ms Petretti and Ms Morton provided into into women and sexual technology, esepcially as related to HIV and reproduction, and they and Dr Moore provided input into policy dimensions of the project.
Impact Proposal for funding, which we will revisit and rework for submission to another funding body.
Start Year 2016
 
Description Sexual technologies 
Organisation University of Sussex
Department School of Law, Politics and Sociology
Country United Kingdom 
Sector Academic/University 
PI Contribution Dr. Dana Rosenfeld led on drafting the proposal, drawing on connections with the HIV sector.
Collaborator Contribution six collaborators - Dr. Sharif Mowlabocus (University of Sussex), Dr. Manon Parry (University of Amsterdam), Professor Matt Cook (Birkbeck, University of London), Ms. Silvia Petretti (Positively UK), Dr. Ann Moore (Guttmacher Institute), and Mrs. Jackie Morton (European AIDS Treatment Group) - contributed to producing a proposal entitled Sexual/ised Technologies, Morality, and Health, submitted to the Wellcome Trust Seed Awards in Humanities and Social Science stream in 2017 (unsuccessful). Dr Mowlabocus, who presented at our funded seminar series, contributed expertise on digital technologies and gay male sexual relations, Dr Parry on reproductive technologies, and Professor Cook on sexual technologies as they relate to HIV. Ms Petretti and Ms Morton provided into into women and sexual technology, esepcially as related to HIV and reproduction, and they and Dr Moore provided input into policy dimensions of the project.
Impact Proposal for funding, which we will revisit and rework for submission to another funding body.
Start Year 2016
 
Description Workshops on HIV communities 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Participants in your research and patient groups
Results and Impact Four events have been held to date, in February, May, July and October 2014. Each workshop has featured two, three or four talks, given by academics, clinicians, activists or members of the HIV patient community. Each paper has generated questions and discussion.

Notable impacts are not yet discernible, since the project has not yet concluded.
Year(s) Of Engagement Activity 2014