OCHIN BLOG - Research and Innovation

Understanding Patient Experiences of Childhood Cancer

Intl Childhood Cancer Day (1)
Understanding Patient Experiences of Childhood Cancer

In partnership with Oregon Health and Sciences University’s (OHSU) Oregon Clinical and Translational Research Initiative (OCTRI), OCHIN is proud to be part of this unique qualitative study that employs the Database of Individual Patient Experiences (DIPEx) approach to better understand the experience of childhood cancer. We will spend the next several months speaking to family caregivers about their childhood cancer journey, from diagnosis, to treatment, and survivorship.

In honor of International Childhood Cancer Day, we asked members of our research team to tell us about their recently-funded project that seeks to understand experiences of childhood cancer, from the perspective of children with a history of cancer and their families.

The Database of Individual Patient Experiences (DIPEx) approach

Developed in 2001 by researchers from Oxford University’s Heatlh Experiences Research Group (HERG), the DIPEx methodology involves conducting in-depth qualitative interviews with a diverse sample of patients and caregivers to understand their experiences with particular health conditions or illnesses. The goal of this approach is to understand the widest possible range of experiences and to encourage the patient or caregiver to tell their story in their own way, focusing on the things that are most important to them.

All interviews are audio and video taped. In addition to publishing results in peer-reviewed literature, findings are synthesized to produce web modules that include lay language summaries describing the range of experiences (illustrated with text, audio, or video clips of patient interviews). In addition, raw interview transcripts are archived in a data repository of health experiences research and are available for future use, upon application and request.

Since its inception, fourteen countries have launched their own DIPEx chapters and joined DIPEx International. The United States launched a DIPEx chapter, called the Health Experiences Research Network, in 2014.

Why is this research important?

By amplifying and elevating patient voices, this study has the potential to provide information and support to childhood cancer patients and survivors and their caregivers. We will create a web module to disseminate findings of this study and anticipate that this will be available online at healthexperiences.org by late 2019.

In addition, researchers will have the ability to request access to the qualitative data from this study, as it will be stored in a repository and can be utilized for secondary analyses. Information from the modules and the data repository have the potential to be a resource to inform current and future research by, for example: providing a greater understanding of and comparing/contrasting patient priorities; justifying research in targeted populations; ensuring that research addresses issues that matter to patients; identifying and improving recruitment strategies; and gaining additional insight into patients’ goals and values, how they perceive their condition and care, their biggest challenges, and how to improve shared decision-making and communication.

Where can people go to find more information about this study and its findings?

If you are interested in learning more about this study, please view our study summary sheet. If you have any questions or would like to participate in the study, please contact us at research@ochin.org