Comparing survey data to qualitative themes in patient stories to help researchers better identify pressing community healthcare needs

Abstract

AbstractBackgroundNarrative medicine is a powerful approach for strengthening clinicians' therapeutic alliances with patients and helping them understand others' perspectives by giving patients a voice. MyPaTH Story Booth is a cross‐sectional observational study that uses narrative medicine concepts to allow community participants to share their health and healthcare‐related experiences through relatively unstructured interviews (i.e., stories). The archive forms a qualitative research ʻcommonsʼ where researchers can learn about patient and caregiver perspectives and tailor research goals to better address community needs. Brief surveys allow storytellers to classify their stories so that the archive is searchable.MethodsThis study assessed sensitivity, specificity, positive predictive and negative predictive values of self‐reported surveys for categorizing 83 stories, compared with a ʻgold standardʼ (most commonly accepted method for interpreting narratives) of qualitative coding. Stories were classified as either having or not having each of 38 different classifications based on US National Library of Medicine (NLM) Health Topics (Type of disorder or condition and Part of the body discussed) or developed with stakeholder input (Type of health/healthcare experience).ResultsSurvey data assessing ʻPart of the body discussedʼ and ʻType of disorder or conditionʼ typically was highly sensitive (64%–95%) and specific (73%–99%) suggesting high adequacy of surveys in identifying stories. Questions focused on ʻType of health/healthcare experienceʼ showed inconsistent and relatively lower sensitivities (48%–93%) and specificities (30%–79%) suggesting lower adequacy of surveys in identifying stories.ConclusionSurvey items based on NLM Health Topics allowed people to categorize their health narratives into relevant, searchable topics making the database more accessible.