Current Research and Collaborations

Our current studies focus on improving the decision interactions between patients, families and healthcare providers. To learn more about any of these projects contact ellen.lipstein@cchmc.org.

• Shared Decision Making About Biologics in IBD - In this pilot trial, we are examining the acceptability and feasibility of a multi-component shared decision making intervention focused on decisions about biologic therapies for children and adolescents with inflammatory bowel disease.
• iBDecide - Our team developed a web app, designed to facilitate adolescent patients’ engagement in treatment decisions. The app, iBDecide, includes information about treatment options; symptom, medication and nutrition tracking functions; and tools for preparing for a clinic appointment. iBDecide is being tested in a pilot trial
• Transgender-Related Decision Support Needs - This series of studies is focused on understanding the needs of transgender youth and their families when making gender-related medical decisions. Our team completed a scoping review of the published literature and decision tools in clinical use and conducted qualitative interviews with healthcare providers from around the country. We are now engaging youth, parents, healthcare providers and community advocates in group-level assessments, a structured group activity and discussion, to better understand the decision support needs of this community.
• Shared Decisions when Choosing between Long-Acting Injecting or Oral Therapy - We are collaborating with a team from the University of North Carolina to identify factors associated with people living with HIV having an interest in using long-acting injectable antiretrovirals, as an alternative to daily oral therapy. We will then develop a tool to facilitate shared decision making about using long-acting injectable antiretrovirals as HIV therapy.
• Engaging Adolescents in Decisions About Return of Genomic Research Results - As collaborators with faculty from the Division of Human Genetics and the Ethics Center, we are conducting a study to assess assenting and consenting adolescents’ choices about learning genomic research results.