METHODOLOGY

All modules and catalyst films included on our website are developed using systematic qualitative research methods as described below.

“Modules” are online resources that present results of a robust qualitative interview study using video, audio, and written extracts to illustrate the many themes that emerged. The resource also includes profile pages with biographies and multiple clips from each participant and resources relevant to the topic area.

“Catalyst films” are short films comprised of rigorously analyzed interview data from diverse patients about their experiences with health and health care intended to spark conversation with patients, families, consumers, health care professionals, educators, and researchers about how to improve experiences of health care.

HERN strives to create resources which carry the weight and power of a personalized interview alongside the rigor and integrity of an academic paper

DIPEx Methodology

HERN is committed to implementing the Database of Individual Patient Experiences (DIPEx) methodology in the United States so that each qualitative research study is conducted with rigor and its corresponding public-facing web-based “module” is interpretive, deeply descriptive, and holistic. To support the development of high-quality modules in the USA, we are committed to abiding by the DIPEx International Guidelines and to the following “Principles of Practice,” appropriately adapted to the US context in general, and to our history of systemic racism and social inequities in particular.

All modules and catalyst films included on our website 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 for web-based modules we make sure that the 30-50 participants we interview from around the country each have different backgrounds and kinds of experiences with health and health care. For catalyst films, we may interview people nationally, or in a specific state or local care setting. Interviews for both modules and catalyst films take place virtually or in people’s own homes or other places they choose to empower diverse participation.

RESPECT EXPERTISE THAT COMES WITH LIVED EXPERIENCES

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 that includes interested parties such as participants, clinicians, advocates, and representatives of community organizations. This group provides on-going feedback and review as the module develops. For catalyst films, a best practice is to work with patient partners and other interested parties to consult on and improve the applicability and relevance of the film.

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 available on this website may be relevant to them. We also create and share catalyst films. Some catalyst films are created from web-based modules and some from separate research projects using DIPEx methodology. In both modules and catalyst films, we take special care to center the voices of those we interviewed.

DISSEMINATE WIDELY

We develop a plan for getting the word out about each new module or catalyst film that draws on existing networks of patients, clinicians, organizations, and advocacy groups. People who contributed their stories may work as “patient experience ambassadors” to introduce the finished module or catalyst film to various audiences. Key findings are published in the peer-reviewed literature.

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.