What is the Health Experiences Research Network?
The Health Experience Research Network (HERN) is a non-commercial, non-profit group, that seeks to bring patients’ voices to American health care. HERN is part of an international movement (DIPEx International) to share patient stories and create resources for patients of diverse identities with particular attention to the intersection of systemic racism and health.
For patients and caregivers facing a new diagnosis or needing to make a health-related decision, other peoples’ experiences can be invaluable. With increasing use of web-based health information, the influence of patient experience has grown rapidly. The healthexperiencesusa.org website will be useful to patients wanting to hear first-hand accounts about experiences with different health conditions and topics—as well as to family and friends of such patients, medical educators, clinicians, other researchers, and to policy-makers.
Who might be interested in HERN?
- Patients and families wanting to learn from the experiences of others
- Clinicians seeking to understand aggregate patient expectations and experience
- Educators wanting to include the patient perspective in teaching
- Researchers who want to improve health care by taking patients’ perspectives into account
- Policy Makers eager to highlight patient experience while avoiding anecdotal accounts
HERN uses DIPEx methodology
HERN uses the Database of Individual Patient Experiences (DIPEx) Methodology, developed by Oxford University, and 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, who 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 interviews clips.
All 15 chapters have launched websites featuring representative video and audio clips from rigorously conducted in-depth interviews—including DIPEx UK which has disseminated patient experiences of over 100 different health conditions via their award-winning healthtalk.org and youthtalk.org.uk sites.
HERN represents the US chapter and you can view the website here: www.healthexperiencesusa.org.
HERN at OCTRI and how to use HERN data
The goal of HERN at OCTRI is to enhance patient engagement in clinical and translational research using a high-quality, evidence-based approach to understanding patient health experiences. OCTRI has led* or supported several HERN modules:
- Traumactic brain injury in veterans
- Adolescent and young adult cancer* (interviews in progress)
- Medication assisted treatment for opioid use disorder* (planned for early 2021)
- Rural Veterans experiences with firearm injuries*
- Gulf War Illness (module in production)
HERN data can be utilized by patients, clinicians, and researchers.
- Patients can learn more about their conditions and what to expect from direct experiences of other patients.
- Clinicians can learn more about their patients' experiences and priorities for their care.
- Researchers can access data repositories for secondary analyses.
To review the HERN modules, please visit the HERN experiences web page.
To access the data repositories, please email: firstname.lastname@example.org.
To collaborate or contract with HERN to develop a new module, please contact OCTRI HERN Director Erika Cottrell: email@example.com.
Project Spotlight: Childhood cancer module
The childhood cancer module was supported by Kellee Parker, DO, who was an OCTRI TL1 Scholar and Pediatric Oncology Fellow at OHSU. Dr. Parker chose to complete her research fellowship with the OCTRI HERN team. She completed 40 interviews of families whose children experienced a cancer event. Analysis is underway with plans to finalize the web-module in 2020. Project outcomes include:
- OCTRI TL1 Scholar study of clinical trial participation in pediatric oncology (manuscript in press)
- Formative evaluation of childhood cancer module with pediatric oncology researchers (n=14)
- Identified areas for future patient-centered programs and research within pediatric oncology
- Initiated HERN collaborations with University of Utah, where Dr. Parker is now faculty.
Participation in HERN modules
Find out if you’re eligible to share your story in our upcoming Adolescent and Young Adult (AYA) Cancer Experience Study.
AYA Cancer Experience
Details coming soon.
HERN data repositories
Researchers can access data repositories for secondary analyses.