One of the greatest joys and responsibilities of democracy is the freedom of speech. We have the luxury and the burden to communicate our struggles, our hopes, our work, and our passion. In the fight against HIV and the long journey to finding new ways for those most vulnerable to protect themselves, a key challenge is to communicate the logic and the promise of this important work.
Research to find new methods of HIV prevention is a complex and arduous endeavor. It involves building trust across divides of race, gender, culture, and privilege. It demands dedication on the part of scores of counselors, study nurses, lab technicians, outreach workers, and scientists. It requires commitment, honesty, and sacrifice from hundreds and even thousands of participants. And it requires communities to embrace an often foreign enterprise—that of scientific research.
Clinical research is hard to explain to people with little or no scientific background. It is like a foreign language, a different culture—but one that holds great promise for the poor and the rich alike. It is up to us to ensure that the potential benefits of science reach all people and that participants and communities understand and can engage productively as full partners in the research endeavor.
Global guidelines, such as the Good Participatory Practice Guidelines for Biomedical HIV Prevention Trials recently published by UNAIDS, in collaboration with AVAC: Global Advocacy for HIV Prevention, are defining new standards for equitable practice between researcher and participant, between donors and community, and between those designing and implementing research and those poised to reap its benefits. This document sets out principles and minimum standards for engaging communities in the conduct of research, including building research literacy, community engagement, and communicating with research stakeholders.
But even the greatest guidelines or constitutions in the world cannot succeed unless we have the practical tools to make them work for everyday people in their everyday lives. For the investigators, study coordinators, and community liaison officers working on the frontlines of these trials, this handbook will serve as one such tool, providing guidance for translating expectations regarding stakeholder communication into concrete practice. The Good Participatory Practice guidelines call for a “written communication plan” as an essential element for all future trials. This handbook describes how to develop an overall communications plan, with special plans for research dissemination and crisis communication.
The HIV field is not alone in confronting changing expectations and new challenges when it comes to communicating about research. Across the board, an increasing number of actors now see themselves as stakeholders in the research process. I see this development as a positive one and an evolution we must embrace. As our world gets increasingly complex, the need for science and research literacy becomes ever more acute. This book, and others like it, is an important contribution toward bridging the worlds of science and community—of bringing more and more people into the conversation about research. Increasingly, science is touching all of our lives and we must ensure that even the most marginalized people are part of the dialogue.
God bless you.
Archbishop Desmond M. Tutu