Health action with informed and engaged societies
After nearly 28 years, The Communication Initiative (The CI) Global is entering a new chapter. Following a period of transition, the global website has been transferred to the University of the Witwatersrand (Wits) in South Africa, where it will be administered by the Social and Behaviour Change Communication Division. Wits' commitment to social change and justice makes it a trusted steward for The CI's legacy and future.
 
Co-founder Victoria Martin is pleased to see this work continue under Wits' leadership. Victoria knows that co-founder Warren Feek (1953–2024) would have felt deep pride in The CI Global's Africa-led direction.
 
We honour the team and partners who sustained The CI for decades. Meanwhile, La Iniciativa de Comunicación (CILA) continues independently at cila.comminitcila.com and is linked with The CI Global site.
Time to read
2 minutes
Read so far

Improving Communication about Uncertainty of Clinical Trial Outcomes

0 comments
This project, implemented from March 2009 to March 2010 by the Reproductive Health and HIV Research Unit (RHRU) in South Africa, focuses on a collaborative participatory process using a local South African musical art form called kwaito to promote clinical trials, highlighting the uncertainties of trial results. The project activities involved a collaboration between young, local aspiring musical talent, participants from an HIV prevention clinical trial, local community stakeholders, and clinical trial staff, to write the lyrics for a kwaito song which the young musicians then performed and recorded. The song was broadcast on community radio, inviting feedback and discussion from community members and stimulating dialogue about the risks and benefits of clinical trial research in the context of developing new technologies to protect men and women from HIV infection.

The specific objectives of the project were to:
  • Capture information regarding discussion about the impact of medical research by recording dialogue during the workshop, analysing opinions expressed in radio call-in shows, and analysing responses to the release of results from the microbicide trial.
  • Use the process of composing song lyrics in a local deliberative musical form to enable selected young local musicians and trial participants to express their suspicions and hopes about research and its impact, risks, and benefits.
  • Facilitate a process to develop a locally situated language to talk about research concepts, to express thoughts about the ethical issues involved in trials, and to discuss the implications of the uncertainties associated with outcomes.
  • Facilitate an engagement between trial staff and community participants through a collaborative workshop effort.
  • Produce a song that brings out an appreciation of the benefits of research whilst also communicating the inherent uncertainties of the scientific process.
  • Conduct a process evaluation using ethnographic participant observation and analysis of the workshop and radio discussions.
  • Feedback insights into the planning of microbicide trial dissemination meetings.
  • Explore responses to this campaign in order to assess whether the new methods used can improve understanding of the nature of research hypotheses and the communication issues involved.
  • Share lessons learned with networks of local and international researchers.
Communication Strategies

The project design included five phases. Phase one involved consultative meetings with community liaison officers, trial clinicians, Community Advisory Groups (CAGs), and the Southern Africa Theatre Initiative (SATI) to elicit their input. These consultations took place during regular project meetings in the first month of the project, and they were used to solicit buy-in from role players and to finalise logistical arrangements for the project activities.

Phase two involved creating a forum for collaboration between clinical trial staff, former trial participants, and the Community Advisory Group (CAG) members to create lyrics and produce a song about the uncertainties of clinical trials. This involved a five-day lyric writing workshop designed to promote discussion between the workshop participants. The workshops were designed to empower young, aspiring musicians and performers and give them an opportunity to create, produce, and record an original song. SATI was responsible for the planning and execution of the workshops and the sourcing of expert facilitators.

Phase three involved broadcasting the song and hosting five related call-in radio shows on Tshireletso Health Talk, the RHRU’s community radio call in show on Jozi FM and Thetha FM. The first two shows launched the song and included guest appearances by the musicians who talked about the meanings of the song. Listeners were invited to critique the song and discuss its meanings. Show three included clinical trials experts from RHRU talking about impending trial results, and invited community members to ask questions about the trial and how the results would be produced. On show four, CAG members were invited to host a conversation with a panel of ex-trial participants who attended workshops in phase two. The shows were recorded, transcribed, and translated for evaluation purposes.

Phase four involved feedback meetings on the microbicide trial result. The experiences of the project activities will be used to inform the planning of the feedback meetings, which will be attended by trial participants, young aspirant musicians, RHRU clinical trial and research staff, and CAGs.

Phase five comprised the evaluation and dissemination of the evaluation report. Social scientists were responsible for data collection and analysis throughout the project.

Click here to download a file of the song.

Development Issues

HIV/AIDS

Partners

Reproductive Health and HIV Research Unit (RHRU), Wellcome Trust, and Institute for Development Studies, University of Sussex.

Sources

RHRU website on November 5 2010.