Communication for Social Change (CFSC) Consortium

This article examines aids2031, a consortium of institutions and individuals who came together in 2007 to examine what the world has learned about the AIDS response in its first quarter-century. Aids2031 has engaged thousands of stakeholders, including people living with HIV and AIDS (PLWHA), scientists, healthcare professionals, social and political scientists, and communication and information technology professionals in an effort to create an "Agenda for the Future" that will chart what can be done to change the face of the pandemic by the year 2031. (2031 marks 50 years since the first report of AIDS.)

The Communication for Social Change (CFSC) Consortium led the aids2031 communication working group and also managed a series of public dialogues about the future of AIDS. The aids2031 communication group began by attempting to find a universally understood definition of what is included in the term AIDS communication. It has also explored: the dominant communication approaches and how they have worked, how AIDS communication is funded, where and how AIDS communication is used and by whom, how such communication has evolved, how it historically has been practiced in countries at greatest risk, the current state of such communication, and where the field, including social networking technology and related communication platforms and channels, is headed in the future. The group has looked at social and political trends, science and technological trends, current AIDS programming, public attitudes and beliefs, policies, and effectiveness of leadership, among other topics.

This report outlines the recommendations from the aids2031 working group. The CFSC Consortium hopes that these recommendations will be a catalyst for ongoing public debate about the future long-term management of AIDS response globally and at local and national levels. The report also includes a summary of the second aids2031 Youth Network Summit (held in Oslo, Norway, in June 2009).

Specifically, "Agenda for the Future" begins with a description of the working group's rationale and methods, followed by a statement of its starting premise. In general, "more people are looking for information and finding it, via traditional and new media; more people are engaging with communication that targets attitudinal change because the aids discourse is being normalized in many societies and it is more difficult to distance or deny it as a relevant subject to engage with." The "Key Findings" section then begins with a discussion of the challenge of finding a clear definition of AIDS communication, confusion around which has hampered measuring/evaluation efforts and has hindered the way we track resources. In short, "There has been little learned or sharing of knowledge about what makes effective aids communication."

For the purpose of its work, the aids2031 group adopts a two-pronged approach to understanding AIDS communication: unmediated and mediated, the latter being the premise of the discipline of communication, employing professional communicators. The working group looks at how such communication has been used to engage audiences, lamenting the fact that "Much current HIV/AIDS communication does not engage the individuals and communities that are most at risk of HIV/AIDS." One recommendation here is that "HIV/AIDS communication in each national or local context needs to include a powerful listening element (including of attitudes and beliefs) and be targeted at sections of society most at risk of HIV/AIDS whoever and wherever they are, without making moral judgments about these individuals' activities or lifestyles."

Next, the working group explores evolution and gaps in AIDS messaging. One core point to emerge here is that "Overall AIDS communication in most countries has shied away from direct two-way communication...in favour of instructing populations at risk about how to behave in order to avoid exposure to HIV. The emphasis has more often been on the risky behaviour and not on the underlying power relationships, values and beliefs that make it difficult for people to avoid risky behaviors. Thus we have inadvertently contributed to an AIDS narrative in which those who should be communicated with most honestly and directly are more often perceived as 'victims or perpetrators' - stimulating a communication class of 'others.' This makes it much harder for general populations to include themselves in long-term thinking about managing AIDS in the future."

Changes in specific channels for AIDS communication are outlined. The working group observes that "Having initially responded slowly, often negatively or with considerable lack of knowledge, media is now showing more positive developments, with greater mainstreaming of the aids story." Highlighted here is the importance of amplifying the voices of advocates, including celebrities such as actors, musicians, and sports figures - and especially PLWHAs themselves. A strong element of the working group's focus is on the role of social networking sites (SNS) in changing the way people communicate about issues and behaviours that impact on HIV vulnerability across the globe. As noted here, SNS provide, on the one hand, very private places - "important territory for supportive outreach and counselling services. It is also a crucial area because it offers opportunities for engaging at a more intimate level than many traditional modes of communication". On the other hand, "SNS can also be very public spaces. This dimension of SNS offers enormous opportunities for organisations and movements. Approaches more sophisticated than those deployed in AIDS communication to date that are sensitive to the culture of the spaces and the way that people operate within them are likely to be most effective." Specific findings from the working group's research that concern SNS in HIV/AIDS communication in developing markets are detailed here. For instance, cost or technical constraints limit people's access to such tools in many parts of the world but these limitations are slowly becoming less significant.

A series of short-, medium-, and long-term recommendations follows (please see the full document to access these recommendations). The working group notes here that there must be recognition of the need for change at the global level; at the same time, "individual program planning and implementation has to integrate grass roots community input that reflects local cultural and audience characteristics and needs."

The latter portion of this report details the key outcomes and recommendations from the June 2009 aids2031 Youth Network Summit. Many of these recommendations are communication-centred, and focus on creating an AIDS response prepared to address the stigma and discrimination faced by young people - both positive and negative. Young working group participants stressed the need for greater investment to support the meaningful participation and engaged leadership of young people living with HIV in the AIDS response. For example: "Increase global networking among young positive-led organisations and initiatives; develop standards of care for HIV-positive speakers, such as debriefing sessions for young leaders after speaking at meetings and conferences; and further develop and strengthen international interactive information technology platforms to connect young people living with HIV and young leaders prior to key events, so that an ongoing support mechanism is in place."

Part of the youth recommendations focuses on the importance of leveraging the power of media and technology to help address HIV-related stigma and discrimination. One suggestion included here is to capitalise on the upcoming FIFA World Cup South Africa 2010 to engage sports celebrities on specific stigma and discrimination issues relevant to young people's lives. Working group participants also floated the idea of a campaign with the proposed title "Text 4 Truth", which would use an interactive short messaging service (SMS) text message quiz designed to debunk HIV/AIDS myths. The youth also suggest the development of a media training programme to address stigma and discrimination by journalists and media professionals towards young people.

Finally, one example from the recommendation section titled "Strengthen the Capacity of Young People to Participate in Policy and Lead" is to create a Young Leaders Mentorship Hub that will facilitate exchange of ideas and knowledge between young leaders and more established leaders, including decision makers in media, policy, and funding. Also, the working group urges the provision of simple and youth-friendly tools on understanding stigma and discrimination, governmental processes, and using human rights frameworks, along with building leadership and advocacy skills through trainings, online courses, and pre-conference workshops.

Communication for Social Change (CFSC) Consortium's Mazi 19, September 2009; and the aids2031 website, accessed on September 14 2009.