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

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.

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).