Improving Nutrition for People Living with HIV/AIDS: The Contribution of an Electronic Discussion Forum

This 6-page report explores the strategy of using an electronic forum ("e-forum") as a channel for sharing information and insights on a subject which is rapidly evolving, and for which practical experience is just beginning to emerge. Specifically, the document shares key findings from efforts to assess the impact and value of the ProNut-HIV Forum, an e-forum sharing guidelines, facts, and experience in the still-developing field of nutrition and HIV/AIDS with, and among, a diverse group of subscribers.

As detailed here, ProNut-HIV was launched in January 2003 as part of a collaboration between the Academy for Educational Development (AED) Center for Nutrition and the AED SATELLIFE Center for Health Information and Technology. The discussion group focuses on nutritional care and support for people living with HIV/AIDS (PLWHA). It is intended to be an information resource that provides a platform for the exchange of current, relevant, and practical knowledge and tools for decision-making. (While AED moderates the group and actively disseminates information, subscribers are strongly encouraged to share their own knowledge and discuss their most pressing issues). The goal is to enhance positive living by promoting constructive dialogue between PLWHA, front-line workers, researchers, HIV/AIDS specialists, programme managers, and policymakers.

Having described the thinking behind, and purpose of, the ProNut-HIV e-forum, the report next outlines the objectives of 2 evaluations carried out since its launch. In order to assess its impact and seek ideas for improvement, organisers emailed a survey twice to the entire subscriber base of more than 700 people in March 2005 (a similar survey process was carried out in 2003) - with an approximately 7.5% response rate in the most recent survey. Overall, the results from both surveys revealed a diverse participation profile, with most respondents living in Africa, and female respondents outnumbering males. One finding shared here, which is explored later in the report, is that only 4% identified themselves as PLWHA; in contrast, 58% identified themselves as HIV/AIDS programme managers and planners.

On the whole, the evaluation process revealed that ProNut-HIV is "a vibrant, participatory tool". Detailed data are shared in the report; one selected finding to emerge is that 43% said they had actively shared information or ideas via the forum. In addition, the evaluation found that participants seem to be sharing the information they glean from the e-forum with their co-workers. This "multiplier effect" "[a]t times...has a profound and far-reaching impact" (quotations from participants are included to illustrate this). The evaluation found that the scope of the forum is growing; the report describes the ways in which the newest participants from the agricultural, governmental, and academic fields are using this resource. In terms of how people find the forum helpful in work and life, the most frequent responses were: sharing knowledge, obtaining up-to-date information, sharing experiences, gaining a sense of community, and keeping up to date on policies, guidelines, and/or protocols. The relatively low percentage (12%) choosing the response "having your voice heard" may, organisers think, reflect the relatively low level of participation by PLWHA in the survey.

Along these lines, one key challenge explored here is how to reach out to, and engage, PLWHA in the e-forum. Although organisers stress that it is impossible to know whether the low level of response by PLWHA to the questionnaire reflects the level of their participation in ProNut-HIV, they do acknowledge the importance of continuing to involve this group - and a variety of suggestions gleaned from the 2 surveys are outlined here. For example, organisers could ask for volunteers among forum participants who conduct work with PLWHA and help them share their experiences through anonymous telephone or email conversations.

Though active sharing of experiences on the part PLWHA and other forum participants has been a key focus of ProNut-HIV, the evaluation found that respondents are still primarily learning and collecting information rather than contributing their own knowledge via the forum. For instance, high percentages of respondents recommended that the forum disseminate clinical guidelines and best practices/lessons learned. Organisers explain this finding, in part, by the fact that the field of nutrition and HIV/AIDS is still developing: practical experience is still at a premium, and people who do not consider themselves experts in the subject are reluctant to identify themselves and share perspectives.

Thus, in short, this particular strategic use of an e-forum was found to fill a knowledge gap in an emerging field. In moving forward, ProNut-HIV organisers plan to continue to try to meet participants' specific expressed needs (e.g., include more agricultural nutrition information, and share documents in HTML format rather than as large PDF documents), as well as to continue to seek creative ways to bring PLWHA voices into the discussion.

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