The challenge of democratic patient representation: Understanding the representation work of patient organizations through methodological triangulation

Fischer, Julia; Bovenkamp, Hester van de

doi:10.1016/j.healthpol.2018.11.011

Cited by 11 publications

(11 citation statements)

References 35 publications

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“…37 Furthermore, the representativeness of the patient committee is important. 38 For most patient committees in our sample, only 25% (or less) of the members were actually patients. Nevertheless, our results point to a correlation between the presence of a patient committee and other activities for PPI indicating that the existence of a patient committee is probably still preferable to not having one at all, with the caveat that this is a complex issue.…”

Section: Discussionmentioning

confidence: 88%

Hospital practices for the implementation of patient partnership in a multi-national European region

Scholtes

Breinbauer

Rinnenburger

et al. 2020

European Journal of Public Health

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Background The extent to which patients are involved in their care can be influenced by hospital policies and interventions. Nevertheless, the implementation of patient participation and involvement (PPI) at the organisational (meso) level has rarely been assessed systematically. The aim of this study was to assess the occurrence of PPI practises in hospitals in Belgium, France, Germany and Luxembourg and to analyze if, and to what extent, the hospital vision and the presence of a patient committee influence the implementation of PPI practises. Methods A cross-sectional study was carried out using an online questionnaire in hospitals in the border regions of the four countries. The data were analyzed for differences between regions and the maturity of PPI development. Results Full responses were obtained from 64 hospitals. A wide range of practices were observed, the degree of maturity was mixed. A majority of hospitals promoted patient partnership in the hospital’s philosophy of care statement. However, the implementation of specific interventions for PPI was not found uniformly and differences could be observed between the countries. Conclusions Hospitals in the region seem to be motivated to include patients more fully, however, implementation of PPI interventions seems incomplete and only partially integrated into the general functioning of the hospitals. The implementation of the concept seems to be more mature in the francophone part of the region perhaps due, in part, to a more favourable political context.

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Section: Discussionmentioning

confidence: 88%

Hospital practices for the implementation of patient partnership in a multi-national European region

Scholtes

Breinbauer

Rinnenburger

et al. 2020

European Journal of Public Health

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“…The authors conclude that especially informal mechanisms play an important role in this process. They show the importance of informal mechanisms that play an essential role in the process of representation 32 . We build on this study and expand it with regard to the elicitation of concrete consequences of dynamics that characterize representation.…”

Section: The Logic Of Representationmentioning

confidence: 97%

“…They show the importance of informal mechanisms that play an essential role in the process of representation. 32 We build on this study and expand it with regard to the elicitation of concrete consequences of dynamics that characterize representation. We would argue that a purely descriptive list of existing mechanisms remains largely uninformative unless they are linked to real‐world consequences.…”

Section: The Logic Of Representationmentioning

confidence: 99%

“…25,27 Although the concept of responsiveness is conceptually quite well developed and follows a certain tradition in political theory (for an overview, see Rehfeld), 19 it remains empirically underexplored. 31 Van de Bovenkamp and Vollaard 30 32 We build on this study and expand it with regard to the elicitation of concrete consequences of dynamics that characterize representation. We would argue that a purely descriptive list of existing mechanisms remains largely uninformative unless they are linked to real-world consequences.…”

Section: The Logic Of Representationmentioning

confidence: 99%

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Representation in participatory health care decision‐making: Reflections on an Application‐Oriented Model

Holetzek¹,

Holmberg

2022

Health Expectations

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Context:The involvement of lay people in health care decision-making processes is now the norm in many countries. However, one important aspect of participation has not received sufficient attention in the past and remains underexplored: representation.Objective: This paper explores the question of how public participation efforts in collective health care decision-making processes can attempt to aim for legitimate representation so that those individuals or groups not present can be taken into account in the decisions affecting them. This paper argues that to make decisions that effectively address those affected, representation needs to be seen as a relevant part of any participatory setting. To support this argument, the paper outlines the concepts of participation and representation and transfers them to health care contexts.Results: A conceptual reflection on responsiveness and the characteristics of representative actors in representative-participatory settings is introduced, which could provide actors planning to conduct participatory health care projects with tools to reflect on the merits and possible flaws of participatory constellations.

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“…The representativeness of POs was also examined in the literature to assess its democratic contribution to health‐care policymaking. In a study on rare‐disease organisations in Austria, Germany and The Netherlands—countries with formal patient representation mechanisms through POs—Fischer and van de Bovenkamp (2019) find that rare‐disease POs rely primarily on informal authorisation and accountability mechanisms to strengthen their claims of democratic representation. In a study on rare‐disease organisations in France, Huyard (2009) identifies two types of PO—pluralistic and monistic—based on how inclusive their internal decision‐making is of various stakeholders and concludes that focusing merely on the internal decision‐making structures of POs is unhelpful in understanding their actions.…”

Section: Literature Reviewmentioning

confidence: 99%

Rethinking Universal Health Coverage: A qualitative study of patient organisation perspectives on the Turkish health‐care system

Yılmaz

2021

Sociology Health & Illness

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Universal health coverage (UHC) has been elevated to the status of a global policy target, but this was at the expense of losing its aspirational meaning. As a case in point, Turkey has been one of the countries that has achieved UHC, according to the technocratic definition. This article employs a combination of deductive and inductive thematic analysis methods to explore patient organisation (PO) perspectives on the Turkish health‐care system based on 26 respondent interviews from 19 POs in Istanbul. Highlighting the inadequacy of the technocratic definition of UHC, the article maintains that an analysis of PO perspectives opens the way for a nuanced and bottom‐up assessment of essential service coverage and financial protection by identifying elusive gaps in both dimensions that would otherwise be lost in generalist evaluations. The findings also underline the importance of keeping intact the UHC’s aspirational element to enable POs to participate in the politics of priority setting in health care.

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The challenge of democratic patient representation: Understanding the representation work of patient organizations through methodological triangulation

Cited by 11 publications

References 35 publications

Hospital practices for the implementation of patient partnership in a multi-national European region

Hospital practices for the implementation of patient partnership in a multi-national European region

Representation in participatory health care decision‐making: Reflections on an Application‐Oriented Model

Rethinking Universal Health Coverage: A qualitative study of patient organisation perspectives on the Turkish health‐care system

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