OCTRI's HERN team engages trainees and amplifies patient voices

Image
Image Credit
Health Experiences Research Network

Navigating the daunting landscape of childhood cancer is getting easier for patients and families thanks to the work of the OCTRI Health Experiences Research Network (HERN) and former OCTRI TL1 scholar Kellee Parker, DO. The OCTRI HERN team conducted 40 interviews with families of childhood cancer survivors to gain insight into the experience childhood cancer. Findings from these interviews prompted Dr. Parker to develop a TL1 research study on clinical trial decision-making, which will ultimately improve this process for future families and oncology physicians, as well as inform further research.

The OCTRI HERN team, led by Dr. Erika Cottrell, interviewed families about their experience of childhood cancer and how it impacted their lives – from when they first noticed something was wrong through treatment and survivorship. A web-based module summarizing common and divergent themes that emerged from the interviews, illustrated with audio and video clips from families, will be disseminated via the www.healthexperiencesusa.org website in 2021.

One of the primary goals of OCTRI HERN is to make the interview data available to researchers for secondary analysis or to inform the development, design and conduct of their research studies. Dr. Parker, OCTRI TL1 Scholar and OHSU Pediatric Oncology Fellow, used findings from the childhood cancer interviews to develop a TL1 study to explore further the factors that shape parental decision making about clinical trial participation. Findings will inform recruitment strategies, the way patients and families are educated about clinical trials, and provide insight into how parents make decisions on novel treatment.

Dr. Parker also worked with OCTRI HERN team investigator, Dr. Vivian Christensen, to interview 14 pediatric oncology researchers with the aim of understanding barriers and facilitators of incorporating patient/family experiences into research; the potential utility of a database of qualitative data on family experiences with childhood cancer; and the desired format and mode of dissemination for data. Two manuscripts describing the findings of these studies are in progress.

Dr. Parker completed a Master’s Degree in Clinical Research through OCTRI's Human Investigators Program. She recently accepted a position as a pediatric leukemia/lymphoma and survivorship physician at the University of Utah.

Visit these links to learn more about OCTRI HERN, the national HERN organization, and OCTRI's TL1 program.

CTSA Program In Action Goals
Goal 1: Train and Cultivate the Translational Science Workforce
Goal 2: Engage Patients and Communities in Every Phase of the Translational Process
Goal 3: Promote the Integration of Special and Underserved Populations in Translational Research Across the Human Lifespan