Is a unified model for patient empowerment possible or desirable?

Abstract

Background: Patient empowerment has a history going back to the 1960’s ( Kayser et al. BMC Health Services Research (2019) 19:242) and originates in the movement for greater citizen participation in societal decision-making (e.g. ‘power to the people’). In the decade of the 1970’s there was a related shift in some healthcare thinking.
 While there has been a proliferation of terms, such as citizen engagement, patient participation, patient empowerment, patient activation and so forth, the fundamental underlying principle is the shift from the patient/citizen as a passive recipient of services to the patient /citizen as active, informed participant in their own health and healthcare.
 These shifts have been reflected in health care policy- person/patient centred care, personalised care and integrated care all put forward models of working that are designed to enhance patient empowerment and a shift from a bio-medical model of health care t a more holistic bio- psychosocial model of care
 Although there had been active proponents of this change, especially in parts of Northern Europe it remains a fragile part of health care
 Method: Unlike some health topics, although patient empowerment is often cited, for example in relation to current work on health technology including mHealth, there appears to be no overarching consensus on a strategy for local implementation, nor even how patient empowerment is defined for strategic purposes. This survey aimed to gather information which would, when collated, help to address these issues. To explore the current standing of patient empowerment at the beginning of 2021 a survey of experts including people expert in lived experience was carried out in a number of European countries (the final total was 25 responses from 14 countries) 
 This was followed up in 2022 by a international round table event of people of lived experience, researchers, policy makers and leading experts to explore this issue and to record the discussion as a marker for future thinking about the concept.
 Results and conclusions: Despite significant activity it was clear it was very siloed and y the concept was diversely defined or interpreted in practice.
 We concluded it seems that the majority of respondents from the 14 countries only use aspects of the concept with no common understanding.
 . If there is such a disparate use of terminology, is it meaningful to refer to ‘empowerment’ as a definition of anything? Is there a better term to use for an umbrella concept?
 These findings confirm that concepts such as person centred care, personalised care and patient empowerment have considerable variations in how they are understood.
 This has significant implication for their implementation when there is such diverse understandings at all levels - Macro, Miso and Micro leading to fragmentation and a lack of a unified approach to evaluation.