Comparing Survey Data to Qualitative Themes in Patient Stories to Help Researchers Better Identify Pressing Community Healthcare Needs

As the number of individuals aged 65 and older in the United States increases, adverse health outcomes are becoming a more pressing issue. Narrative medicine is “a commitment to understanding patients’ lives, caring for the caregivers, and giving voice to the suffering.” It has emerged as a powerful approach for strengthening clinicians’ therapeutic alliances with patients and helping them understand others’ perspectives. As a fairly new practice in public health, the movement towards narrative medicine has gained considerable attention in clinical medicine, particularly through improvements in interviewing techniques, training, and its application in interprofessional practice to promote collaboration and reduce conflict among specialized professions. MyPaTH Story Booth is a prospective observational study where community participants share their health and healthcare related experiences through relatively unstructured interviews. The archive forms a qualitative research “commons” where researchers are invited to qualitatively analyze stories and extracted themes are used to learn about patient and caregiver perspectives and to tailor research goals to better address community needs. Brief surveys allow storytellers to classify their stories so that the archive is searchable. This study assessed the sensitivity, specificity, positive predictive, and negative predictive values of self-reported surveys for categorizing 83 stories, compared with a “gold standard” (most commonly accepted method for interpreting narratives) of qualitative coding. Stories were classified as either having or not having each of 38 different classifications. Results showed that the survey data assessing “Part of the body discussed” and “Type of disorder or condition” typically was highly sensitive (64-95%) and specific (73-99%) suggesting high adequacy of surveys in identifying stories. Questions focused on “Type of health/healthcare experience” showed inconsistent and relatively lower sensitivities (49-93%) and specificities (30-79%) suggesting lower adequacy of surveys in identifying stories. Overall, brief surveys can allow people to categorize their health narratives by type of disorder or condition and anatomic location. The public health significance of these findings is that the creation of a searchable archive through low-cost survey data allows users to identify stories that address topics of interest, meet project goals, and tailor research to better address pressing community healthcare needs