Understanding ‘Good Health care’ from the Patient’s Perspective: Development of a Conceptual Model Using Group Concept Mapping

Background There is an increasing focus on measuring performance indicators of health care providers, but there is a lack of patient input into what defines ‘good care.’ Objective The primary objective was to develop a conceptual model of ‘good health care’ from the patient’s perspective. Exploratory analyses were also conducted to investigate (1) differences in patient priorities based on demographic and clinical factors, and (2) differences between patients and health stakeholders (e.g., clinicians, researchers) with respect to patient health care priorities. Method These objectives were accomplished using group concept mapping. Following statement generation, PatientsLikeMe members, Baltimore community members recruited through a university-affiliated clinic, and stakeholders individually sorted the statements into meaningful categories and rated the statements with respect to importance. Qualitative and quantitative analyses generated a final conceptual model. Results One hundred and fifty-seven patients and 17 stakeholders provided input during statement generation. The 1779-statement pool was reduced to 79 statements for the structuring (sorting and rating) activities. In total, 221 patients and 16 stakeholders completed structuring activities through group concept mapping software. Results yielded a 10-cluster solution, and patient priorities were found to be relatively invariant across demographic/clinical groups. Results were also similar between patients and stakeholders. Conclusions This comprehensive qualitative and quantitative investigation is an important first step in developing patient-reported outcome performance measures that capture the aspects of health care that are most important and relevant for patients. Limitations and future directions are discussed.