What is the Health Experiences Research Network?
The Health Experiences Research Network (HERN) is a non-commercial, non-profit research group that seeks to bring patient voices to American health care. HERN is part of an international movement (DIPEx International) to enrich the understanding of people’s experiences of health, healthcare, and illness for the benefit of patients, caregivers, health care students and professionals, policymakers, and researchers.
HERN, launched in 2014, is the United States chapter of DIPEx International and is a partnership among researchers at Oregon Health & Science University, the University of Wisconsin-Madison, Johns Hopkins University, Yale University, the University of New Mexico, the University of Utah-Salt Lake City, and the Veterans Administration.
What is DIPEx methodology?
DIPEx International is a unique global collaboration of scholars, clinicians, and patients committed to enriching our understanding of people’s experiences of health, healthcare and illness using rigorous qualitative methods. Developed by Oxford University, the Database of Individual Patient Experiences (DIPEx) methodology has been adopted by researchers in 15 countries to date.
With this methodology, video-recorded interviews are conducted with a diverse sample of 40-50 patients per condition. These participants are encouraged to describe their experience, emphasizing the things that are most important to them. These interviews are used to produce web-based modules that include lay language summaries illustrated with video, audio, or written interview clips.
Each country produces a unique website that directly benefits the general public by providing reliable information about the experience of living with different health conditions. In addition, qualitative data is archived and available for future use, upon request.
To date, HERN has published three completed modules on their website and another seven are in production.
- Breast cancer
- Childhood cancer
- Adolescent and young adult cancer
- Medication assisted treatment for opioid use disorder
- Clinical trial participation
- Rural Veterans experiences with firearm injuries
- Gulf War illness
How can I use HERN/DIPEx data in my research?
Web-based modules and data repositories can be utilized by a variety of stakeholders including patients and caregivers, health care students and professionals, policymakers, and researchers.
OCTRI is leveraging the HERN approach to enhance the integration of patient voices and experiences into clinical and translational research. For example, data from HERN modules can be used to:
- Augment community engagement activities by giving researchers access to the widest possible range of patient health experiences
- Illuminate health experiences of patients and caregivers who are harder to reach, including those from rural, minority, and underserved populations
- Enhance the patient centeredness of research questions by highlighting what issues are most important to patients and point to gaps in research and/or unexplored areas of inquiry
- Inform research on the collection of patient-reported outcomes (PROs) and methods for identifying concepts relevant to patients and generating items to measure those concepts
- Understand patient experience of participating in clinical trials and how to improve recruitment and retention
To access the raw data from HERN modules, please email: firstname.lastname@example.org.
For more information about using HERN data in your research and/or to inquire about collaborating on a new module, please contact OCTRI HERN Director, Dr. Erika Cottrell: email@example.com.
Project Spotlight: Childhood cancer module
Dr. Kellee Parker, OCTRI TL1 Scholar and OHSU Pediatric Oncology Fellow, chose to complete her research fellowship with the OCTRI HERN team. Dr. Parker used findings from the OCTRI HERN childhood cancer interviews to develop a TL1 study to explore 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 helped initiate HERN collaborations with University of Utah, where she is now faculty.
Want to review current HERN modules?
Topics include traumatic brain injury, depression, and cancer risk.
HERN data repositories
Researchers can access data repositories for secondary analyses.