The full potential of IU’s vision for Precision Health can only be fulfilled when a Precision Health effort goes beyond the lab and the clinic, and engages patients and their communities in both the health management strategies, and the research effort. The Behavioral, Psychosocial and Ethics scientific pillar will enable us to fulfill that potential through robust patient engagement and focus on the ethical conduct of research and health care.
The Behavioral, Psychosocial, and Ethics scientific pillar will address 3 principal challenges:
- The long term success of precision health research and medical care depends on collecting biological samples and phenotypic information from thousands of people and following them for years. An important component of such long-term studies is patient engagement: educating potential participants about the research, involving participants and communities in the research and its outcomes. IU’s Precision Health initiative will address these issues through a focus on effective communication, participant engagement, and research ethics.
- Precision health research can most effectively change patient health care only if health professionals can communicate complex information effectively to help patients understand the personalized health information so that they can reduce their risk and manage their illnesses.
- Successful precision health care requires a successful balance between accessibility of electronic health records and protection of individuals’ privacy and confidentiality. We will work with members of the Precision Health team, patients and health care providers to conduct research in this area in order to achieve this balance.