Representing the ‘Voice’ of Patients: How Third Sector Organisations Conceptualise and Communicate Experiential Knowledge in Health Service Development

Abstract

The growing prominence of patient and public involvement in health services has led to the increased use of experiential knowledge alongside medical and professional knowledge bases. Third sector organisations, which position themselves as representatives of collective patient groups, have established channels to communicate experiential knowledge to health services. However, organisations may interpret and communicate experiential knowledge in different ways, and due to a lack of inherent authority, it can be dismissed by health professionals. Thus, drawing on individual interviews with organisation representatives, we explore the definitions and uses of as well as the ‘filters’ placed upon experiential knowledge. The analysis suggests that whilst experiential knowledge is seen as all-encompassing, practical and transformative, the organisations need to engage in actions that can tame experiential knowledge and try to balance between ensuring that the critical and authentic elements of experiential knowledge were not lost whilst retaining a position as collaborators in health care development processes.

Participatory Governance Practices at the Democracy-Knowledge-Nexus

“…4 Yet, it is not always spelled out what exactly a democratization would presuppose and how it could be realized in the face of democratic dilemmas, epistemicdemocratic tensions and collective action problems. Particularly interesting for the study of lay expert involvement are those works in the field that examine the knowledge resources of 'ordinary citizens', and amongst them those that highlight the representativeness challenges that come with involving only small numbers of external actors into policy-making (Barnes 1999;Blume 2017;Jones et al 2021;Lehoux et al 2012;Martin 2008;Meriluoto 2017;Pols 2014). When conceptualizing expertise in the upcoming section, studies that theorize about the conditions of reliable, persuasive and useful expertise of different origin are built on in addition (Beck and Forsyth 2015;Collins and Evans 2002;Grundmann 2017;Haas 2004;Holst and Molander 2017;Krick 2021b;Lentsch and Weingart 2011) as well as exemplary empirical studies of patient and service user expertise (Epstein 1995;Meriluoto 2017;Noorani 2013).…”

“…While personal, individual experiences may be the basis of (useful) lay expertise, this kind of knowledge is often enriched and complemented by other forms of knowledge. The expertise of patients, for instance, not only draws on their 'raw' experience with a disease, but often also on the experiences of their peers that is shared in self-help forums, as well as credentialed scholastic knowledge learned from self-study and talk with medical professionals (Blume 2017;Noorani 2013;Pols 2014;Jones et al 2021). As health studies have pointed out, this mix of knowledges and the process of comparing and sharing illness-and treatment-related testimonies, widens illness-related wisdom.…”

“…In these courses, people with illness and health treatment histories are trained to analyze and distance themselves from their personal experience, in order to provide peer support and advise experts and policy-makers in a preferably rational, impartial and unemotional way (Blume 2017;Martin 2008;Meriluoto 2017;Noorani 2013;Pols 2014;Jones et al 2021). Processing, generalizing and rationalizing personal insights in this way is meant to enable the trained expert-by-experience to speak on a par with decision-makers, convincingly advocate the group's view and provide input that is considered useful and reliable (Blume 2017;Martin 2008;Pols 2014;Jones et al 2021). Yet, this 'making of experts' has also been criticized by both participants and researchers for taming and streamlining people and compromising the authenticity of their knowledge (Meriluoto 2017: 3;Blume 2017: 97;Noorani 2013: 54;Jones et al 2017: 567f.).…”

“…As Barnes (1999, 70f. ) points out, organizing as groups within social movements creates the very conditions under which it is possible for people to act as genuine 'representatives' of communities of identities (see also Jones et al 2021). Interest organizations can establish effective communication channels and accountability relationships with the people they speak for, which enable them to pool the knowledge, experience and interests of many affected individuals and feed these perspectives into the policymaking process.…”

The advent of the citizen expert: Democratising or pushing the boundaries of expertise?

“…Across the broad range of initiatives that build on citizen expertise, their potential merits seem to be easy to articulate, while possible downsides and dilemmas are not as visible: They are pitted as an answer to the public disenchantment with long-established channels of participation (such as political parties and elections) and as a response to public calls for opening up science and policy-making to wider circles of society (Jones et al, 2021; Pallett, 2020). In addition, they provide opportunities to tap into idle knowledge resources and produce efficient solutions that are close to the affected people’s problems (Lancaster et al, 2017; Rabeharisoa et al, 2014).…”