All together now – patient engagement, patient empowerment, and associated terms in personal healthcare

BACKGROUND: Patients as active partners in their personal healthcare are key drivers to reducing costs, securing an effective usage of resources, and ensuring patient-provider satisfaction. Even though these benefits are acknowledged, a theoretical framework for the plethora of concepts used in this context, such as patient engagement, patient empowerment, or patient involvement is missing. Furthermore, the heterogeneous or synonymous usage of these terms leads to miscommunication, missing standard conceptual measures, and a deficiency in theory building and testing. Our objective is to show what the relationships and distinctions between concepts focussing on patients as active partners in their personal healthcare are. METHODS: A systematic literature review was conducted to consolidate terms related to patients’ having an active role in their healthcare. From 442 articles screened in PubMed, a final set of 17 papers was included. Any articles conceptualising or presenting relationships between the concepts were included. Information was synthesised, and contradictions were unravelled systematically. The concepts and their relationships are structured and represented by employing a concept map. RESULTS: Patient-centredness is a concept dominantly influenced by health care providers and can enhance patients’ competencies, attitudes, and behaviours towards their personal healthcare. Enabling patients to become more empowered can ultimately lead to their greater involvement and engagement. Fostering an active role of patients can also increase their adherence to the care pathway. In general, patient engagement seems to be the most conclusive and furthest developed concept in terms of turning patients into active partners in their personal healthcare. CONCLUSIONS: We plead for a stricter demarcation and therefore a terminological standardisation of the terms in the future to avoid further ambiguity and miscommunication. The concept map presents a basis for a uniform understanding and application of the concepts. Through a comprehensive understanding of the terms and their dimensions, relationships between the concepts can be utilised, measures can be derived, and theory building and testing can be enhanced, leading to better acceptance and utilisation of concepts in healthcare services. Furthermore, patient engagement is presented to be the most conclusive and furthest developed concept in the subject area. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-022-08501-5.