Once a person has participated in a clinical trial at the BJ Medical College AIDS Clinical Trials Group Network’s site in Pune, India, they transition from patient to friend.
“If we find ourselves in their neighborhood, we will stop in for a visit,” says Savita Kanade, MSc.
The communication between the clinical trial unit in Pune, about three hours southeast of Mumbai, and its participants is a two way street Kanade has cultivated over the years. Site staff are on the guest list for housewarming parties and weddings. Participants from studies dating as far back as 2007 are among those invited to events held at BJ Medical College, says Kanade, who supervises the Clinical Trial Unit’s outreach program.
“My goal is to strengthen our CAB (Community Advisory Board) in terms of outreach, recruitment and retention and use social media to achieve this,” she says. “I would also like to develop a website for our CAB.”
Kanade hails from a strong community health background. Before working at the ACTG site in Pune, she spent 15 years working as a social scientist on projects relating to women’s health including decision-making around abortion, domestic violence, formation of sexual partnership among adolescents and conversations between parents and teens about sex and sexuality.
In addition to supervising outreach efforts at the Pune site, Kanade serves as CAB liaison and as Co-Vice Chair for the ACTG’s Outreach, Recruitment and Retention (OO&R) Subcommittee.
“Savita always impresses me with the way she moves through this world,” says Michael Louella, Chair of the OR&R Subcommittee. “Whether it’s embracing new technologies or picking up the check after dinner, she does everything with a quiet grace that to me is sign of true strength and power.”
She is a familiar face having presented twice at the ACTG Network meeting in Washington, DC, in July 2012. She spoke at the third community session about her CAB and during the OR&R Subcommittee Business Session about a survey she conducted of the Network’s sites and access to communications tools such as the Internet, phones and Fax machines.
“I want our sites to know how to use social media,” Kanade says. “I post events to the ACTG Facebook page and I want this to be a tool that aids us in recruitment.”
People living in and around Pune speak mainly Marathi (the local dialect) and Hindi (the national language) or English, and Kanade admits the biggest barrier to informing local people of clinical trial enrollment is translating science into comprehendible terms in the local language. But she is making progress, having translated informed consent materials and protocol schema into Marathi.