"Research Jam": Engaging patients and other stakeholders through human-centered design to improve translational research.

Effective stakeholder engagement increases research relevance and utility. Though published principles of community-based participatory research and patient-centered outcomes research offer guidance, few resources offer effective techniques to engage stakeholders and translate their engagement into improvements in research process and outcomes. The Indiana Clinical and Translational Sciences Institute (Indiana CTSI) is home to Research Jam (RJ), an interdisciplinary team of researchers, project management professionals, and design experts, that employs human-centered design (HCD) to engage stakeholders in the research process. Establishing HCD services at the Indiana CTSI has allowed for accessible and innovative stakeholder-engaged research. RJ offers services for stakeholder-informed study design, measurement, implementation, and dissemination. RJ's services are in demand to address research barriers pertaining to a diverse array of health topics and stakeholder groups. As a result, the RJ team has grown significantly with both institutional and extramural support. Researchers involved in RJ projects report that working with RJ helped them learn how to better engage with stakeholders in research and changed the way they approach working with stakeholders. RJ can serve as a potential model for effectively engaging stakeholders through HCD to improve translational research.

Implementation of a journal prototype for pregnant and parenting adolescents.

Teenage pregnancy and childbearing remain pressing public health issues that have garnered attention from public health officials and social services agencies. This paper reports on the initial implementation and formative evaluation of a journaling program used as a means of communicating health information to pregnant and parenting adolescents (young women age 15-19) while also providing participants with a means of self-expression. The journaling prototype was implemented in a community-based agency in the Midwest by Family Support Specialists (FSSs) who made home visits on a monthly basis to assist pregnant and parenting adolescents (n=52) with successful family planning and public health education. A mixed method approach of qualitative (analysis of journals, field notes, and responses of semi-structured interviews with FSSs) and quantitative (questionnaires from pregnant and parenting adolescent respondents) data with purposive sampling was employed to evaluate the implementation of the journaling intervention. Twenty of the 52 study participants were pregnant when the journaling intervention was implemented, while 32 were not pregnant, but recently had a child and were currently parenting. Two core themes emerged from analysis of the data after the implementation of the journals: (1) usefulness of the journal and responsiveness to participants' information needs and (2) functionality challenges. The results offer practical starting points to tailor the implementation of journaling in other contexts. Further, areas for improvement emerged regarding the distribution timeline for the journal and the content of the journal itself. As such, we discuss the lessons learned through this collaborative project and suggest opportunities for future phases of the journal intervention.