IU’s Amelia Knopf, PhD, MPH, BSN and Mary Ott, MD, MA have recently been granted $1 million from the Patient-Centered Outcomes Research Institute (PCORI) to explore the use of public deliberation to improve informed consent practices in clinical research. Dr. Knopf is an Assistant Professor and Researcher at the IUPUI School of Nursing whose work focuses on the prevalence of sexually transmitted infections among marginalized populations. Dr. Ott is a Professor of Pediatrics at the IU School of Medicine and IUCB faculty investigator who specializes in adolescent medicine and research ethics.
In their joint PCORI project, Drs. Knopf and Ott focus on how to best obtain consent from teenagers for the purposes of (sensitive) clinical research. Teens suffer higher-than-expected rates of HIV infection, making them an ideal group for HIV infection research. That being said, teens are also a population highly vulnerable to harm and research mismanagement, so special care must be taken to protect them and their privacy during research trials. Teens are legally children, and thus required to have parental consent to participate in clinical research– but participation in research on HIV infection may be a topic difficult to openly discuss among parents and their children. These difficulties in gaining consent from teens hinder research efforts at understanding the dynamics of HIV infection in young populations. Public deliberation is a forum where community members learn about and discuss issues that affect them and collaborate to develop solutions. Drs. Knopf and Ott investigate whether public deliberation may assist in cases where obtaining consent from vulnerable individuals about sensitive health topics, such as HIV, is a challenging task.
PCORI’s mission is to fund studies that produce evidence-based information in order to better healthcare outcomes for all populations. High-quality and publicly available information improves informed decision-making among patients and providers, and allows people to achieve the health outcomes they desire. Drs. Knopf and Ott are funded through December 2023. For more information, see PCORI’s portfolio entry for this project.