What we do
We're using our combined talents as researchers, innovators, and health care professionals, and our experiences as patients, parents, caregivers, and advocates to bring you real information on the experience of health and illness from a wide range of patients.
HERN is committed to implementing the Database of Individual Patients' Experiences (DIPEx) methodology in the United States. Learn more about our Principles of Practice and the DIPEx Methodology by visiting Our Methodology page.
HERE'S HOW WE DO IT
The study team selects a topic or condition based on your feedback, national relevance, and stakeholder interest.
The study team begins recruiting people to share their stories. Recruitment efforts are specifically designed to capture the widest possible range of voices and experiences, with a concentrated effort to reach those who are not typically represented in research.
The study team conducts qualitative interviews with eligible participants. These interviews typically last about 2 hours and take place where the interviewee feels most comfortable, most commonly in their home. The interview always begins with a request for the participant to share their story.
The interviews are transcribed and the study teams work with the transcripts to identify both shared and unique themes. These themes become the basis of the topic summaries for the website modules.
Topic summaries, video and audio clips, transcripts, and participant profiles are prepared for the creation of a new website module. Participants are given access to full transcripts and retain full ownership over how their interviews are displayed on the website and used in the future.
SHARE THE NEWS
Once the module is completed, it is published to healthexperiencesusa.org as a reliable resource for people like you. We share the resource far and wide via our partners and affiliates, social media, and newsletter. Additionally, we use our findings to inform academic research publications and presentations.