Patientology revisited: Toward tailored care pathways

• Published in: Journal of evaluation in clinical practice 2023-04, Vol.29 (3), p.472-484
• Main Authors: Schneider‐Kamp, Anna, Nielsen, Helle Lykke, Sodemann, Morten
• Format: Article
• Language: English
• Subjects: care pathways; Child; Communication; Critical Pathways; health capital; Health Personnel; Humans; Medical personnel; Multisystem inflammatory syndrome in children; Patient Participation; Patient-centered care; patientology; Patients; patient‐centred care; Social Capital
• ISSN: 1356-1294; 1365-2753
• DOI: 10.1111/jep.13792

Background Concepts such as patient‐centred care, patient empowerment and patient participation have challenged our understanding of what it means to be a patient and what role patients play in care pathways. Consequently, patientology as the medical sociological and anthropological study of patients is currently being reconceptualized through perspectives of health as individualized and privatized capital. Aims This article explores the potential of such a patientological perspective to enhance our understanding of and tailor care pathways. Particularly, we aim to investigate how such a perspective can contribute to tailoring care pathways to the capacities of individual patients and their relatives. Materials & Methods We elaborate on an emerging health capital‐theoretic model for patientology and study its potential for optimizing care pathways through two distinct cases of care contexts: communicative challenges in the context of integrative primary care for vulnerable chronically ill multi‐morbid patients and the potential of parent involvement in the acute hospitalization of children suspected to be affected by multisystem inflammatory syndrome in children. Results Our results shed light on the importance of cultural and social capital of patients and their relatives in the design of effective tailored care pathways. We find that a lack of cultural and social capital presents a significant barrier to effective communication between patients and the healthcare professionals involved in their care pathways. We also find that understanding the cultural and social capital of relatives provides an entry point to their effective involvement in the care pathways of their children. Discussion & Conclusion The implications of these findings extend beyond the concrete care contexts studied. This article contributes to our understanding of care pathways through a perspective of health inequalities being based on differences in health capital and demonstrates how the health capital‐theoretic patientology model facilitates the systematic development of guidelines for healthcare professionals to assess patients' resources and tailor their care pathways accordingly.