While interviewing a range of experts involved with research, development and advocacy of new HIV prevention tools at the recently concluded XIX International AIDS Conference (AIDS 2012), I was reminded of a transgender woman who had said to me in an interview four years back that: "There is no doubt that we need more HIV prevention options – current options don’t work especially for people like us… and this is the only possible reason to motivate me to advocate for new prevention options." This community expert further added: "…’perfect’ technologies that disregard social realities don’t necessarily deliver results…" The need to engage affected communities as research moves ahead, and engage them with dignity as equal partners is the key to ensure that finally we develop products that are efficient and also when they become available, are actually used by populations in need.
Agreed Dr Suwat Chariyalertsak, Director, Research Institute for Health Sciences (RIHES), Chiang Mai University, Thailand, who recently received a global award for best retention of clinical trial participants in the HIV Prevention Trial Network (HPTN) 052 study: "We got the retention award for having 99.0% retention in HPTN052 trial. I think the secret for increasing adherence or retention is to develop clinics or research sites as ‘second homes’ for the trial participants. Most of the trial participants are happy to spend one to two hours in the clinic and have a relationship of confidence with their doctors or nurses. Men who have sex with men (MSM) and transgender trial participants of iPrEx trial were happy to talk to their healthcare providers round the clock. They call the nurse 24 hours round the clock and nurses take duties to attend to these calls. Participants call them for a range of reasons not just limited to the trial – such as discussing problems in their lives. Sometimes as they are very young, 19-20 years, at times they have a broken heart and they want to find somebody to talk to in confidence. We should support trial participants as much as possible because they are sacrificing themselves for greater common good by volunteering to participate in the research trials."
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