Optimizing communication, participant engagement, and the ethical conduct of precision

Drawing on the extensive experience of the IU Center for Bioethics and the Bioethics and Subject Advocacy Program (BSAP) of the Indiana Clinical and Translational Sciences Institute (CTSI), we will support the Precision Health Initiative by working with researchers to optimize communication, participant engagement, and ethical conduct of research. Where open questions exist, the BPSE will conduct research, including ethical analysis and empirical methods such as focus groups, randomized trials, and public deliberation exercises, as appropriate.

Encouraging behaviors that can maximize the involvement of patients and the effectiveness of precision health prevention and treatment

Interdisciplinary investigators from Nursing, Medicine, and the Humanities on the IUPUI and IUB campuses have a long history of developing such interventions to promote health behavior change to prevent, detect, and manage illness. These interventions are highly individualized and provide personalized (precision) messages and content specifically designed to meet the unique needs of each user. We will extend the reach of precision health research and clinical care by developing personalized behavioral interventions that mimic the natural process of individualized consultation that takes place during face-to-face health care encounters, but at significantly lower costs and with greater reach.

Helping to maximize the use of electronic health records for research and health promotion, while also protecting the confidentiality of patients and research participants and allowing individual access and control

Precision health information such as genetic sequencing will be an increasingly important part of electronic and personal health records, for researchers and healthcare providers. The storage and use of such data raises concerns about privacy and confidentiality and about patient consent and access to health information. We will support other projects in the Precision Health Initiative, including the Data and Informatics Cluster, by working with investigators and leadership to help explain precision health information to patients and obtain consent to its storage and use. Investigators will also conduct research on how best to provide patients and research participants with opportunities to access and have input on the use of such data.