A Hierarchy of Power: The Place of Patient and Public Involvement in Healthcare Service Development

Abstract

Amidst statutory and non-statutory calls for effective patient and public involvement (PPI), questions continue to be raised about the impact of PPI in healthcare services. Stakeholders, policy makers, researchers, and members of the public ask in what ways and at what level PPI makes a difference. Patient experience is widely seen as an important and valuable resource to the development of healthcare services, yet there remain legitimacy issues concerning different forms of knowledge that members of the public and professionals bring to the table, and related power struggles. This paper draws on data from a qualitative study of PPI in a clinical commissioning group (CCG) in the UK. The study looked at some of the activities in which there was PPI; this involved researchers conducting observations of meetings, and interviews with staff and lay members who engaged in CCG PPI activities. This paper explores power imbalances when it comes to influencing the work of the CCG mainly between professionals and members of public, but also between different CCG staff members and between different groups of members of public. The authors conclude that a hierarchy of power exists, with some professionals and public and lay members afforded more scope for influencing healthcare service development than others-an approach which is reflected in the ways and extent to which different forms and holders of knowledge are viewed, managed, and utilized.

O papel da argumentação em processos deliberativos nas instâncias de controle social do Sistema Único de Saúde

“…"There is no way to construct a deliberative environment in which asymmetry, power, and potentially coercive flashpoints do not contribute to the outcome" 32 (p. 74). No caso da saúde, estudos de experiências de participação de usuários e da sociedade civil em ambientes de deliberação demonstram que existem hierarquias de poder 33 , nas quais certos recursos como a expertise, a inserção na máquina burocrática e o acesso a informação diferenciada distribuem desigualmente as capacidades de influenciar as decisões.…”

Between funder requirements and ‘jobbing scientists’: the evolution of patient and public involvement in a mental health biomedical research centre - a qualitative study

“…Nevertheless, there is considerable evidence that despite funders' insistence on the involvement of service users and members of the public in health research, the power dynamic between healthcare professionals, researchers and service users has changed little. Resistance to power sharing is common, and scientific knowledge is routinely privileged over experiential and other forms of knowledge [11][12][13][14]. In this context there are indications that involvement practice remains tokenistic [15] and underpinned by a technocratic rather than a democratic rationale.…”

Users' and researchers' construction of equity in research collaboration

“…Limited time, lack of funding, mismatched expectations, negative attitudes and differences in status are described as negatively influencing an ‘equal collaboration’. While some studies underline the need to share power, others pay attention to the ways power is played out by using different theoretical approaches . Different studies aiming to explore power in research collaboration tend to draw the conclusion that power hierarchies still exist …”

“…While some studies underline the need to share power, others pay attention to the ways power is played out by using different theoretical approaches . Different studies aiming to explore power in research collaboration tend to draw the conclusion that power hierarchies still exist …”