Colin Halverson, PhD, a faculty investigator at the IU Center for Bioethics and assistant professor of medicine at IU School of Medicine, has been awarded a K01 Career Development Award from the National Human Genome Research Institute. His project is titled “Improving Care for Rare Genetic Diseases: Patient–Provider Communication and Patient Validation in the Ehlers-Danlos Syndromes.” Supported by this five-year award (2022-2027), Dr. Halverson will receive training and conduct studies to improve our understanding of the role that genetic testing plays in the assessment and validation of patients’ subjective experiences.
Patients with chronic pain conditions and rare diseases often face mistrusting and dismissive clinicians, a complex healthcare system, and burdensome symptoms. This award will support Dr. Halverson as he continues his research in this field, with the mentorship of Clair Francomano, MD (IUSM, Department of Medical and Molecular Genetics), Kurt Kroenke, MD (IUSM, Department of Medicine), Ellen Clayton, MD, JD (Vanderbilt University Center for Biomedical Ethics and Society), and IU Center for Bioethics director Peter Schwartz, MD, PhD, and others. Dr. Halverson has already published some of his earlier research on patients with Ehlers-Danlos syndrome [https://pubmed.ncbi.nlm.nih.gov/36322007/, https://pubmed.ncbi.nlm.nih.gov/36093773/, https://pubmed.ncbi.nlm.nih.gov/34524722/].The award will also provide Dr. Halverson with further training in bioethics, quantitative data analysis, intervention research, and patient-centered genetics care. He will conduct ethnographic and mixed methods research with patients, scientists, and thought leaders from across the country to improve how we care for these populations. The ultimate goal of his study is to identify communication interventions to ease patients’ diagnostic odysseys and to improve patient–provider relationships for EDS and similar rare diseases.