Saint Louis University School of Public Health (Vijaykumar & Baker), Global Youth Coalition on HIV/AIDS (Banerjee)

"From this case study we learn that ICT tools can be effectively used to govern and mobilize social change to improve public health problems, especially those that are affected by multi-dimensional issues like gender, economics, race, and education..."

This 23-page report examines a specific communication strategy for addressing HIV/AIDS among youth people: bringing youth together to use information and communication technologies (ICTs) in the form of "e-consultations". The case study describes and critically evaluates 2 e-consultations that the Global Youth Coalition on HIV/AIDS (GYCA) conducted with its members: 1) a participatory, shared decision-making approach to inform the GYCA's initial strategic plan; and 2) the development of programme materials and the strategic advocacy plan for the 2006 International AIDS Conference (IAC) in Toronto, Canada. The analyses identify critical strengths of e-consultations in meeting the GYCA's aims, and important areas for improvement in future replications of the e-consultation model. Finally, the authors discuss implications of the study for other public health issues, and the role of ICTs and e-consultations in technology-driven health communication programmes, worldwide.

The report opens by describing the motivation for the formation of the Global Youth Coalition on HIV/AIDS (GYCA), a youth-designed, youth-led international nonprofit alliance designed to empower young leaders worldwide with the knowledge, skills, and resources to scale up HIV/AIDS interventions among their peers.

Subsequent sections outline how ICTs have been used for development around the world, with a particular emphasis on defining and providing context for e-consultations, which facilitate online deliberation and consensus building among key stakeholders by eliciting answers to critical questions.

Next, the authors describe the first GYCA e-consultation, which grew out of the Bangkok (2004) IAC. As detailed here, after an online discussion group and coalition website were created on the Taking It Global portal, the leaders brainstormed on the most critical issues facing youth with regard to HIV/AIDS, and subsequently launched an e-consultation with the intention of performing a needs assessment to guide the development of the coalition. The main goal of the 4-week online platform was to garner maximum participation and extract region-specific insights from geographically diverse stakeholders. Key taskforce members moderated the discussions, and also picked the themes for each week based on their experiences and knowledge of the youth HIV/AIDS situation. Participants were encouraged to respond to statements in their native language, and each week the content of the previous week's discussion was summarised in English, Spanish, and French to maximise member engagement.

Information about participation levels (365 participants representing 48 countries contributed a range of perspectives to the questions posed) and impact on organisational priorities and structure is shared here. The authors of the report explain that the final e-consultation report, prepared by the moderators and translated into English, Spanish, and French, was shared widely with participants, and with hundreds of HIV/AIDS and reproductive health organisations via listservs and email. Participants were asked to share the report with youth who did not have access to the consultation process.

The second e-consultation took place on the eve of the Toronto (2006) IAC, and was designed to help shape an advocacy agenda for reaching policymakers and adult allies. Working in partnership with the Toronto YouthForce (TYF), an alliance of over 100 international youth non-governmental organisations (NGOs) and networks, GYCA invited their own members and YouthForce members to participate in the e-consultation, which was conducted on the Taking It Global e-forum. YouthForce members assisted in designing the e-consultation and its questions, facilitating the consultations each week, writing weekly summaries, compiling the results into a final report to be shared with partners and funders, and translating the results into English, Spanish, and French.

The evaluators noted that 218 participants representing 36 countries participated in this second e-consultation. Findings from the process are outlined here, as are impacts - such as the fact that access to health services was established as one of the main items on the advocacy agenda for the IAC conference. In addition, based on ideas shared in the e-consultation, the GYCA and YouthForce established a 'Commitments Desk' in an effort to encourage international policy-makers and key adult allies to articulate specific, time-bound commitments at the desk. Another idea to emerge from the online exchange was to lobby with conference organisers, which resulted in the establishment of a Youth Pavilion where youth leaders hosted forums, discussion sessions, and networking events with their adult allies. Finally, YouthForce was able to procure funding for t-shirts, banners, posters, a youth website (as part of the main Conference website), and rallies. Many youth leaders were seen or heard on mass media channels like radio and television, as part of a push to establish the youth voice and presence.

The authors then provide a detailed, critical evaluation of these 2 e-consultations, addressing questions such as these: Was the e-consultation process conducted as planned? Were the consultation objectives and what was expected of the citizens made clear? Did the consultation reach the targeted audience? Was the information provided appropriate? Were the contributions informed and appropriate? Was feedback provided both during and after the consultation? Was there an impact on policy content?

Next, they share lessons learned, and provide some concluding thoughts. They suggest that:

• Organisations aiming to conduct an e-consultation need to develop a clear strategy - containing consultative goals, thematic areas to be discussed, a timeline, and an idea of the range of participants they wish to attract. They should communicate this with participants, keeping in mind how much expertise and experience the potential participants have in the e-consultation topic.
• It can be useful to determine the evaluative framework to be used prior to implementation. The authors note that "the assessment of the utility and findings from e-consultations would benefit from a broad range of data collection and analytical techniques, including qualitative and quantitative assessments."
• The authors stress that, in order to maximise impact, ICT tools must include the populations being affected in critical decisions. Thus, working to ensure inclusiveness is a key challenge; e-consultations with global participation face what the authors describe as "a major challenge", since those in resource-constrained areas (with no or little access to technology) can be left out. Attending to this issue, they say, is crucial, since people in these areas may be at high risk for many health problems, including HIV/AIDS. They note that one possible strategy to ensure inclusiveness is to increase the duration of the e-consultation. In addition, they stress that those who do have access may require technical assistance to learn how to summarise others' opinions.
• Designing the e-consultation in more than one language, depending upon the demographics of the participants, can help foster participation.
• When choosing potential participants, organisers might do well to determine whether they wish to reach smaller, more specific audiences, or a large, all-inclusive audience. ("Larger audiences will take larger promotional efforts but they also allow the organizers to potentially tap into ideas and insights that might otherwise have been left out").
• Organisers should, according to the authors, consider what information they will want to collect from respondents (such as demographics).

In conclusion, the authors note that, "In a realm such as HIV/AIDS, where civic engagement is so heavily emphasized, the notion of 'participation' is germane to an e-consultation, especially because the underlying principle of the whole process is inclusiveness. Thus, it is imperative to consider that while ICTs promise greater access to information and greater connectivity, their proliferation creates new social and professional imbalances that threaten to further exclude some populations."