All modules included on www.healthexperiencesusa.org are developed using systematic qualitative research methods as described below.
- Represent Diverse Perspectives: Because we are committed to representing the broadest possible range of health experiences, we find a diverse sample for each population we are studying. This means that we make sure that the 30-50 participants we interview for each have different backgrounds and different kinds of experiences with health and health care. Interviews take place in people’s own homes or other places they choose in order to enable diverse participation.
- Respect the Expertise that Comes from Lived Experience: We assume that people are experts when it comes to their own health experiences. Our goal is to understand those experiences as fully as possible. We therefore begin each interview by asking participants to tell us their own stories, in their own words, and then ask a more structured set of follow-up questions.
- Deeply Engage Participants: Participants are given the choice of being video or audio-recorded. They are given access to full transcripts and retain full ownership over how their interviews are displayed on the website and used in the future. Many stay involved as advisors or to help disseminate findings (see below).
- Learn from Advisors: For each module, we assemble an advisory group which includes participants, clinicians, advocates, and representatives of community organizations. This group provides on-going feedback and review as the module develops.
- Analyze with Rigor: Multiple researchers analyze and categorize transcripts from each of the interviews. We use qualitative research coding methods to identify relevant patterns and themes.
- Organize and Present Participants’ Stories: Once we have our established themes, they are presented as web-based modules at www.healthexperiencesusa.org. What we learned is organized by categories and topics that help visitors to the website discover what is relevant to them. We take special care to retain the voices of those we interviewed, and include relevant clinical and background information.
- Disseminate Widely: We develop a plan for getting the word out about each new module that draws on existing networks of patients, clinicians, organizations and advocacy groups. People who contributed their stories may work as “patient experience ambassadors” to represent the finished module for various audiences. Key findings are published in the peer-reviewed literature.
These methods help us create resources which carry the weight and power of a personalized interview alongside the rigor and integrity of an academic research paper. If you have any questions about these methods, we encourage you to take a look at the detailed description offered by our British counterparts at healthtalk.org, or you can contact us.
The Health Experiences Research Network is led by researchers from non-profit institutions who are dedicated to sharing patients’ stories that are not influenced by commercial interests. We do not accept funding from any organization that profits from health care.